tag:blogger.com,1999:blog-31284242604925548222024-03-05T12:31:19.640-08:00Living for LucyLucy's Mamahttp://www.blogger.com/profile/01276610711792112286noreply@blogger.comBlogger81125tag:blogger.com,1999:blog-3128424260492554822.post-37049635603870453342015-07-09T21:01:00.001-07:002015-07-09T21:02:03.577-07:00Happy Birthday, Lucy!Whew! *puff puff* That's me, blowing the dust off.<br />
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It's been awhile! And it was a while between the last couple, too - that's what happens as a completely physically dependent child gets older. Around here, anyway; during the day, I'm the sole entertainment and care provider, so by the time night rolls around, all my creativity has been sucked into a sorta large six-year-old, and there's nothing left for my poor, neglected blog.<br />
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That's right, I said SIX! Our little miss Lucy is hardly little anymore, and has officially moved into two-hand age tallying. She will be starting kindergarten in the fall (she loved pre-K so much we had her complete two years' worth) is still full of sass, and can somehow show it even more! She loves her dolls, is still favoring classic Disney movies over the fancy new animation, and continues to adore my cat-in-heat singing (we'll see how much longer that lasts!) Daddy maintains his position as the apple of her eye, naturally. Lucy is now fully bipap dependent, and while we are looking into traching, she's happy with her respiratory support. <br />
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When Lucy was diagnosed, and I'm sure I've said this before, I didn't cry. I stood there, stone-faced, while a geneticist told me that my baby was going to die before she turned two years old, and I bounced Lucy in my arms, and I didn't cry. I suppose I was in denial. Oh, I bawled when she was hospitalized for testing - sat up nights rocking her as she slept, sobbing, praying, begging for it not to be anything serious, promising the world if it wasn't. But it was.<br />
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And I guess I just refused to accept that. Refused to believe that any person on earth could tell me what would be with Lucy. Because, news flash - no one can. No one can tell you, with absolute certainty, what will happen to your baby - happen with their life - whether they're medically fragile or not. They can guess what <i>may</i> be, they can predict what will <i>probably</i> be, but they can't tell you what <i>will</i> be. God can do that, but He's imparted this beautiful gift called hope, so He's probably not going to share that information with you.<br />
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Lucy is proof that no one can tell us what will be. And I have never once regretted being in denial. I'm proud of it. I deny that anyone can tell me how my child's life will play out. Apparently, so does Lucy. <br />
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<br />Lucy's Mamahttp://www.blogger.com/profile/01276610711792112286noreply@blogger.com5tag:blogger.com,1999:blog-3128424260492554822.post-88910688663884427302015-03-22T10:22:00.000-07:002015-03-22T10:22:13.237-07:00The Amazing Momford's Magic ActDid you watch Sesame Street before Elmo took over? Then you might remember the Amazing Mumford the magician and his peanut butter sandwiches, and may have understood my punny blog post title. If not, now you do.<br />
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I think parents, and by default, grandparents, end up learning a lot of "magic" when rearing children. It's mutually beneficial for both parties to at least attempt to pull this magic out when disaster threatens.</div>
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When I see people out with little kids, I try to cut them slack if the kid is causing a ruckus, or if they're seemingly ignoring the child. We all have our moments, and it's not like I've been following you around for an hour and saw the 45 minutes you were trying to contain your child, or were answering an endless stream of "why?"</div>
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So when I saw who I'm guessing was a grandmother and her granddaughter in the thrift store yesterday morning, and the grandma was snapping at the girl to be quiet, I tried not to judge. Never mind that she told her to be quiet, to stop moving, to quit being naughty, and that she would get a spanking at even the hint of the girl (who was pretty well-behaved for a toddler in a thrift store) opening her mouth or making the slightest movement. That grandma wanted to thrift in utter silence. "Maybe the girl has been tearing it up all morning, and the grandma just needs a moment's peace," I thought.<br /><br />Imagine my surprise (or lack thereof, I suppose, if I'm honest) when I heard a woman snapping at a child to be quiet this morning at the flea market, and I looked up and saw the same pair. The toddler who had been through the thrift store the morning before, was now being walked through rows of dusty wooden Pepsi crates and yellowing doilies at the flea market. And if she dared to make a sound or balk in any way, she was scolded. </div>
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I couldn't help but think what a difference a bit of magic might make. (Note: I said might. Maybe it had been tried. Maybe the rest of the day was spent swimming with bottlenose dolphins in a sea of ice cream and sprinkles, and the grandma needed half an hour of junking. I don't know. But for anyone who wants to jump down my throat for "judging," this is my disclaimer.) My favorite magic trick is misdirection.</div>
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When Lucy was younger - closer to this girl's age - she was stronger. And highly irrational. I believe it's also known as the "terrible twos." Anyway, I could go head to head with her over her tantrums, and she had the strength to scream and bawl it out (at a much lower decibel than most toddlers,) and I could stand by with a suction while she screamed her way through staring at the wall for being such a snot. Good ol' regular parenting. And when I wanted to do something that she maybe wouldn't have otherwise cared for, we made it a game; peekaboo at the fabric store, shaking water sprinkles off the veggies while making dinner. When all else failed, and it was something that no fun could be extracted from, she got a diversion while I took care of the necessary (re: a video of her choosing.)</div>
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As she's gotten older, the irrational, short-tempered toddler has been replaced by a young girl who has anxiety issues. They stem from identifiable sources, and are warranted, and we are trying to work through them. As she's aged, she's also gotten weaker. Crying rapidly - rapidly - turns into hyperventilating that she can't recover herself from, and quickly becomes an emergency for her. The magic of misdirection has become crucial for Lucy, for her safety and well-being. Calm discussion, or singing a favorite song works the best now that she's older... though she is still a huge fan of playing game and general silliness in stores and at home, because that's just who she is ;)<br /><br />All this to say - just try some magic. I know you're tired, and you want to possibly uproot your hair, and you just need to get these errands done, or you just want a moment to yourself. But before you resort to snapping out threats or growling a punishment at your child... take a breath, stoop down, give them some REAL attention, and make it a game. Find something pretty to marvel over. Make airplane or monster truck noises with the cart. Shake the red peppers you're washing like maracas. Be your own little Mary Poppins. I guarantee you, you will both come away from the experience feeling worlds better than if you had skipped over that time you could make your own magic, and acted on your frustration instead.</div>
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<br />Lucy's Mamahttp://www.blogger.com/profile/01276610711792112286noreply@blogger.com0tag:blogger.com,1999:blog-3128424260492554822.post-34465461777162230112015-01-26T10:13:00.001-08:002015-01-26T10:13:53.794-08:00Pointed Praying<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: white; line-height: 24px;">Rejoice always, pray without ceasing, in everything give thanks; for this is the will of God in Jesus Christ for you. - 1 Thessalonians 5:16-18</span></span><div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: white; line-height: 24px;">Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. - Matthew 7:7</span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: white; line-height: 24px;">Living in the world of special needs families has, over time, made me a bit more cautious when speaking about what God has done for Lucy. I know that there are victories that Lucy has had that come as a direct result of our prayers. How do I share those, though, when there are so many families who have prayed just as fervently, or moreso, and their answer hasn't been the one they desperately wanted? It seems so unfair. And so I've become quieter about Lucy's blessings, thanking God privately, in the hopes that I would avoid hurting other faith-led families whose prayers weren't resulting in their hoped for outcome.</span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: white; line-height: 24px;">It seems that may have inadvertently led to the dwindling of my requests put before God. Days are so full, and nights have been sleepless, and when I think to pray, it's lately been just to thank Him, and to pray in generalities - keep us safe and healthy, be with those less fortunate, etc. In not taking the extra time to praise Him for the specific requests He fulfills, I've forgotten to make those pointed requests. We live our lives doing what we can on our end to make sure life is running smoothly, but part of living in faith is remembering that we can't do it all, and God *wants* us to rely on him. We won't know all the outcomes, and ultimately, it's out of our hands - that's what faith means.</span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: white;"><span style="line-height: 24px;">Lucy still hasn't been tolerating much time off her bipap, and over the past few days, it's been down to quick breathing treatments, then back on. Bath attempts have been disastrous, so we've been doing bed baths. Yesterday, I was so hoping to get her in her tub for a good scrub and soak. I took the time to pray, hard and specifically. I prayed for her, and I prayed over the tub and drying area, which is where she always really starts to panic.</span></span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: white;"><span style="line-height: 24px;">We did everything we could on our end, everything we always do - cranked up the heat in the house to the almost-passing-out temperature, chose loose-fitting clothes for fast dressing and brought them in the bathroom so we could dry and dress quickly. Laid out towels and washcloths and soaps, ready to use. We talked it up to Lucy, prayed with her, and brought her in to get her in the tub...</span></span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: white;"><span style="line-height: 24px;">...and she did fantastic. She was calm, and not just calm - happy. We were able to get her whole bath done with no panic. Then the tough part; getting her dried and dressed. If Lucy feels even a hint of cold, she starts to hyperventilate. If we take too long, she starts to fuss, and then hyperventilate. We sang to her and toweled and lotioned and dressed, and though she was a bit testy at the end, by the time we got her into her room she was in good spirits, and we managed to get her bipap back on without incident.</span></span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: white;"><span style="line-height: 24px;">It was miraculous. There wasn't anything that we did that we don't do every single time, in an attempt to keep her calm... except the pointed prayers. It was an obvious reminder that we can't do it all, and we shouldn't pretend that we can. We are responsible for doing every logical thing we can to keep Lucy healthy and happy - utilize her machines, treatments, proper diet. We are responsible for learning Lucy, reading her changes and moods and nuances in her behavior, and caring for her accordingly. I can't just leave Lucy on her own all day every day, say a prayer for God to take care of her, and expect it to happen... but I can pray for Him to aid me, to guide me, and to lend His strength and power to the areas where I have none.</span></span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: white;"><span style="line-height: 24px;">And the answers may not always be what I want to hear, what I want to see. Part of having the whole "ask and you shall receive" thing work is asking for things that are in line with God's will for us. God's will for us is for good, whether it's what we want for ourselves or not. There are a million variables in life, and we can never predict how getting that thing we really wanted will affect us down the road. God sees the whole picture.</span></span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: white;"><span style="line-height: 24px;">"Which of you, if your son asks for bread, will give him a stone? Or if he asks for a fish, will give him a snake? If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask Him?" - Matthew 7:9-11</span></span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: white;"><span style="line-height: 24px;">We need to be willing to ask Him. And I need to remember that. And I need to remember that even if the response doesn't come the way I want it to, that doesn't mean He doesn't have our best interests in His heart. For today, though, I'm praising Him for the answered prayer of a peaceful bath :)</span></span></span></div>
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<span style="font-size: x-small;">After bath ritual is watching Frozen - Lucy chose Anna for the </span></div>
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<span style="font-size: x-small;">front, Elsa on the back :)</span></div>
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Lucy's Mamahttp://www.blogger.com/profile/01276610711792112286noreply@blogger.com1tag:blogger.com,1999:blog-3128424260492554822.post-62295697559208029302015-01-05T10:11:00.000-08:002015-01-05T10:11:01.536-08:00Lives Matter - on the matter of living<div class="separator" style="clear: both; text-align: center;">
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<span style="background-color: white; color: #181818; font-family: georgia, serif; line-height: 18px;">"There is nothing like staying at home for real comfort." - Jane Austen</span></div>
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<span style="background-color: white; color: #181818; font-family: georgia, serif; line-height: 18px;">Winter is mostly that, for us. Lucy is not immunocompromised - her immunity works the same as anyone else's. It's her physical ability to cope with the symptoms that is the problem. Someone who can't cough and can't swallow is going to have a very hard time with all the junk that comes with a cold or flu. So we keep her home, and we take extra precautions to minimize the potential for germs to enter our home. Not all SMA families do what we do, and that's fine. What we do works for us, and we don't expect it to be what's right for everyone.</span></div>
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<span style="background-color: white; color: #181818; font-family: georgia, serif; line-height: 18px;">Lucy's first major respiratory event happened when she was 3. She lost consciousness briefly due to lack of oxygen. It happened because she had secretions in her throat, and a breeze hit her in the face, and she sucked in and choked. Now, there are some kids with SMA who deal with major episodes daily; they desat and turn blue, and their parents or nurse manage to get them cleared, and moments later they're acting like it never happened, while their caregiver stands shaking. </span></div>
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<span style="background-color: white; color: #181818; font-family: georgia, serif; line-height: 18px;">Lucy is not one of those kids.</span></div>
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<span style="background-color: white; color: #181818; font-family: georgia, serif; line-height: 18px;">These events stay with Lucy, and since she is nonverbal, we have to do our best to talk to her about them, answer questions we think she may have, and not scare her additionally by saying something that might not have even been on her radar. Physically, she recovered quickly from the early ones. The one she experienced this fall, though... it has left a lasting mark on her. She panics easily, and hyperventilates when we try to do anything that she feels may compromise her airway. </span></div>
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<span style="background-color: white; color: #181818; font-family: georgia, serif; line-height: 18px;">We realized early on that Lucy loves routine, and is not a big fan of travel, or change in her routine. She enjoys relaxed, controlled environments. Of course, that can also depend on her mood and energy - sometimes she likes boisterousness and surprises :) Overall, though, unless we can tell she's in one of those moods, we keep it calm for her. Lately, her idea of calm enough is not leaving her room, reading stories, playing with some of her toys, and watching lots of movies.</span></div>
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<span style="background-color: white; color: #181818; font-family: georgia, serif; line-height: 18px;">And we let her. We've learned that pushing too hard only results in setbacks and mistrust. Lucy knows Lucy. She knows how she is feeling, what she is thinking, and, as she ages, what her capabilities and desires are. We can only hope to guess correctly, for the time being. And that's not enough anymore. So as she grows, we have to let her take more charge, and make more decisions, in the path her life is taking.</span></div>
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<span style="background-color: white; color: #181818; font-family: georgia, serif; line-height: 18px;">So far, she has chosen mostly this.</span></div>
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And that's okay. It's okay for her, and it's okay for us. And I hope that other special needs parents who have children with the same proclivities understand that it's okay for them, too. It doesn't mean that your child is not living life. It does not mean your child is miserable, deprived, a vegetable, or whatever else the masses would have you believe, because they choose to spend their time at home, or even in bed. It means they're an individual, and that life of derring-do and record breaking isn't one that they want for themselves. And that's okay.</div>
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<span style="font-size: x-small;">Checking out Christmas lights in the living room at 3am on </span></div>
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<span style="font-size: x-small;">a sleepless night - this was quite an adventure for Lucy! She </span></div>
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<span style="font-size: x-small;">liked it for the first 10 minutes, and then wanted to go back </span></div>
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<span style="font-size: x-small;">to her room... so we did :)</span></div>
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We want Lucy to want to learn, obviously, and to do projects and communicate effectively. Primarily, though, we want her to do things if she ENJOYS them. I want her life to be full in that it's full of things that make her happy - not because we're checking off boxes on society's list of what a person with a handicap must achieve to be of value.</div>
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<span style="font-size: x-small;">Currently that means we're full of Frozen stuff ;)</span></div>
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I refuse to measure the fullness of another person's life by a set of standards put forth by someone who is not that person. If Lucy wanted to zip line, or snowboard, or surf, or rock climb, we'd figure out a way for her to try those things. She doesn't - at least not for now. And while I do encourage her to try things that I believe she'll enjoy, based on past experiences with her, I have learned that she will like what she likes. I can't make her into anyone else. I can watch other SMA kids do activities that will blow your mind, things you'd never think could be done with a wheelchair, a trach, a bipap, while immobile. I can watch them and be happy for them, and think "Yeah! They're getting to do what they want! That's awesome!" Because they're choosing to do those things, and it's fantastic that they can find a way to make it work. The exclamations in my head are never "Wow, their life is full! They're accomplishing so much!" Because to me, living is not defined by activities - not if the fullness and accomplishments they provide aren't enjoyable to obtain, or the activities are ones that scare you, or make you feel unsafe or uncomfortable. Full living has happiness in it, and enjoyment, and it's helping others to feel happiness and enjoyment. There is plenty of the scary, undesirable, and unfun that we as humans trudge through every day - why elect to subject yourself to it to meet someone else's definition of a full life? To me, anyway, that's what makes a good life. I can't define living for anyone else ;)</div>
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<span style="font-size: x-small;">Pushing - we took her out at the end of November to get a tree. Success!</span></div>
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<span style="font-size: x-small;">So the next week, we went to the Christmas parade (above). It was mostly enjoyed.</span></div>
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<span style="font-size: x-small;">So after that, we hung around the house. Cues come from Lucy.</span></div>
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For some kids, all of those events and activities are just want they want to be doing, what they enjoy - and for them, it makes life full. That's wonderful for them! But I hope that when I post pictures of Lucy hanging out, in her bed, doing the ordinary, unexciting things that she likes to do, you can look at it and think yeah! She's happy! She's doing what she loves! She has such a full life! Because for her, that's exactly what it is.</div>
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<span style="background-color: white; color: #181818; font-family: georgia, serif; line-height: 18px; text-align: left;">“After all," Anne had said to Marilla once, "I believe the nicest and sweetest days are not those on which anything very splendid or wonderful or exciting happens but just those that bring simple little pleasures, following one another softly, like pearls slipping off a string.” LM Montgomery, Anne of Avonlea</span></div>
Lucy's Mamahttp://www.blogger.com/profile/01276610711792112286noreply@blogger.com2tag:blogger.com,1999:blog-3128424260492554822.post-35335026537506909092014-12-30T17:50:00.001-08:002014-12-30T17:50:53.959-08:00Yes, We're Still Here - Addition Edition! Sorry for the long interlude, faithful readers! Looks like my last post was at the end of August, so that was right before Lucy got sick. Wah wah... Yep. Lucy got sick right at the beginning of September, and it was a doozy. She couldn't kick it for a full month, and then she had what I think was some allergy problems right on the end of it that extended it into mid-October, and then she had a vomit, and an additional choking episode. A pretty scary episode, that dropped her oxygen level into the 60s (100 is what you're shooting for) and kept her heart rate low for awhile afterward, which is unusual for Lucy.<br />
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All that means that we are doubly, triply, quadruply and beyond blessed that she's in her new room now. Lucy hasn't wanted to spend much time off of her bipap, and has been reluctant to leave her room. She's dealing with a lot of anxiety, due to this episode she had, and understandably so. She prefers the comfort of her safe zone, and we are more than happy to allow her that comfort. We're working her back up to what we hope will be her old baseline as far as time off of her bipap, and working on getting her out and around the first floor, but it's slow going. Lucy is older, and weaker, and we are still figuring out when to push and when to back off and recognize that she needs extra help. The anxiety also seems to be affecting her sleep; she appears to be afraid to go to sleep, thinking that we will leave her alone, and has been crying when she starts to feel herself falling asleep. There has been constant wakefulness through the night, every night, with lots of crying - she's even panicked when I've had to go to the bathroom... 10 feet away. I had to yell to her over and over that I could hear her and was coming back. We are working on reassuring her and easing her anxiety... but it's hard. We can't guarantee her nothing will happen. It has, and it can. She seems to be calming down a bit these past few days, so we're hoping she's relaxing again.<br />
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This would be a completely different feeling, a completely different situation, if we were still in her old room. We were tight on space, both in her room and her bath, and that would have only added to the stress of the situation. As it is, Lucy can now do school time (she had her teachers and therapists still visiting her at home until the end of November) and play time comfortably in her room, if she chooses not to leave. The amount we have to carry her is drastically reduced, since we aren't navigating a flight of stairs, and so it's safer and more comfortable for her to head to the kitchen, living room, or dining room to work on projects or help me bake :) We can roll her right to where she needs to go on her hi-low base, and the only transfer that needs to happen is from her bed to the base. Bathing is a snap now too, with the higher, larger tub - two people can easily access her, and she can stretch her legs and arms comfortably. It's truly a dream come true, for all of us!<br />
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I had taken copious amounts of pictures throughout the entire process, and was going to put together a type of flip-book slideshow, but... well, the best laid plans and all... anyway, that plan is scrapped. You'll get to see them in the entirely un-fancy blog post style.<br />
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And here they are!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgV4l6TG8NWmh9gdATsL229lv6XhJDS7e_P1HbEgQoQi2QaQLwH3PwpGm5kBS1tOq5sXdkJG583AyNId6hM4wrmjaaKIfC3ef2id-0fy4TCTgSSIDOo0qvXS79W1uJExmdiVA8UKvZ8v6to/s1600/new+room23.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgV4l6TG8NWmh9gdATsL229lv6XhJDS7e_P1HbEgQoQi2QaQLwH3PwpGm5kBS1tOq5sXdkJG583AyNId6hM4wrmjaaKIfC3ef2id-0fy4TCTgSSIDOo0qvXS79W1uJExmdiVA8UKvZ8v6to/s1600/new+room23.jpg" height="320" width="240" /></a></div>
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<span style="font-size: x-small;">The bathroom mirror cost a whopping $6, and is a plastic made</span></div>
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<span style="font-size: x-small;">to look like wood, so spray paint to the rescue. Seriously, people,</span></div>
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<span style="font-size: x-small;">check your local thrift stores! Or don't; more for me then ;)</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLlnljmFgvKOL9jW5M7EujjtRGr0pM4G5ZGzWWVFRxihbdc7PwI2BJNvQ8xMH6juuedqx4fSzqEn2STgU5KPC2wo3Zcx3DgWqEK37sWz1RBGOyS768Sf_iI5JchI3v4wMtE-dCOJdAw6dv/s1600/IMG_2240.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLlnljmFgvKOL9jW5M7EujjtRGr0pM4G5ZGzWWVFRxihbdc7PwI2BJNvQ8xMH6juuedqx4fSzqEn2STgU5KPC2wo3Zcx3DgWqEK37sWz1RBGOyS768Sf_iI5JchI3v4wMtE-dCOJdAw6dv/s1600/IMG_2240.JPG" height="240" width="320" /></a></div>
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<span style="font-size: x-small;">New tub!</span></div>
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And because I like to decorate, some pictures of what I cobbled together. I spent close to a year thrifting items from local charity and resale shops, and painting, sewing, and cleaning them up. Thrifting is definitely a slow process when you have a specific look in mind, but the money it saves you makes it totally worth it! Plus, you can't beat the unique looks you can get out of it :)</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfhJIATYH0DEHo4qIbl4B4nQiQtScZ16rovxueuKaULT9kBUfY-jZbmXaFBWwxZinrZi3Y9uxbu0SvXQOAnjfug7Rp3l0ZaerNa2TnlfEAZILyAuKP-C6Sok2VS3zp6yGPb1HTA9r16XKI/s1600/IMG_2309.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfhJIATYH0DEHo4qIbl4B4nQiQtScZ16rovxueuKaULT9kBUfY-jZbmXaFBWwxZinrZi3Y9uxbu0SvXQOAnjfug7Rp3l0ZaerNa2TnlfEAZILyAuKP-C6Sok2VS3zp6yGPb1HTA9r16XKI/s1600/IMG_2309.JPG" height="320" width="240" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiA5-P6rJINX9g2fP_Eo-NEACBbfZfLrHQTdNkQBc7cIhqp8Lrp2_aS_I6GuYqxWn4R6O-_j16sypaCMbH_O7z1h7k3W3jPb2xlssFKGrbPR_FSlJ-NEy3qdilApph8JZuJK5nijQTE_t-/s1600/IMG_2681.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiA5-P6rJINX9g2fP_Eo-NEACBbfZfLrHQTdNkQBc7cIhqp8Lrp2_aS_I6GuYqxWn4R6O-_j16sypaCMbH_O7z1h7k3W3jPb2xlssFKGrbPR_FSlJ-NEy3qdilApph8JZuJK5nijQTE_t-/s1600/IMG_2681.JPG" height="320" width="240" /></a></div>
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<span style="font-size: x-small;">All of the cut glass pieces were thrifted; the aqua </span></div>
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<span style="font-size: x-small;">glass candleholder was 90% off at Hobby Lobby. The </span></div>
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<span style="font-size: x-small;">bowl and pitcher set was also thrifted, and then spray painted,</span></div>
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<span style="font-size: x-small;">as was the frame. The print in the frame was custom sized by a</span></div>
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<span style="font-size: x-small;">seller on Etsy, and I had a coupon for a free print from Shutterfly</span></div>
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<span style="font-size: x-small;">in just the size I needed! Score!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYDCLoZIJkDgptyYD5ARYzW9hqZzQgqacAm9aW6XSpaHThKffGCiG4MxrSY-rrWvnPuW9OZJs9zwY4UHsECMszYPT4w9pUpicH7DOtsAQyMp9qOdJt6wBgHqObReh4r4Zx8lNbLdj5JOp1/s1600/IMG_2112.PNG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYDCLoZIJkDgptyYD5ARYzW9hqZzQgqacAm9aW6XSpaHThKffGCiG4MxrSY-rrWvnPuW9OZJs9zwY4UHsECMszYPT4w9pUpicH7DOtsAQyMp9qOdJt6wBgHqObReh4r4Zx8lNbLdj5JOp1/s1600/IMG_2112.PNG" height="320" width="320" /></a></div>
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<span style="font-size: x-small;">I hit a major jackpot and found most of these hand embroidered vintage</span></div>
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<span style="font-size: x-small;">linens in a pile, for $1 each. The lady behind me at the checkout agreed :)</span></div>
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<span style="font-size: x-small;">I cut most in half, and sewed them to a sheer curtain I had thrifted as well. This</span></div>
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<span style="font-size: x-small;">project was a PAIN, but I love the way it turned out! Thanks Pinterest, for the idea!</span></div>
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The bathroom: so, SO much room! Room to navigate Lucy on her hi-low base, to either the tub or the shower. A changing area that her feet aren't hanging off of, a tub that she won't outgrow, EVER. The tub is only 12 inches deep, so bending down to wash her up is a thing of the past. And STORAGE! For her linens and toiletries; our old bathroom didn't even have a closet, or the space for it. And OUTLETS! Our other bathroom doesn't have those either. The perks of living in a house that was built in the 1920s ;) A big, huge, immense thank you to the Kalhamer family at <a href="http://modernmarblemfg.com/stone/index.htm" target="_blank">Modern Marble</a>, for taking care of Lucy's custom tub on short notice (our other plan for it did not end up being feasible), along with the other surfaces in her bathroom, and giving us a discount on this necessary, but understandably expensive, custom work.</div>
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Speaking of discounts - I believe every. single. business. that we worked with during this project gave us some kind of discount. Our contractors, Dan and Marcia Valle, kindly explained the reason for our addition to everyone they involved in the project, and were met with so much generosity (and showed quite a bit of it themselves!) <a href="https://www.facebook.com/pages/Silica-Plumbing-Heating/121734511216516" target="_blank">Silica Plumbing</a>, who did all the work in the bathroom and provided the shower and fixtures, actually donated the entire cost of their work and supplies. The plumber who came out got to meet Lucy, and she was able to come in with us when we chose the bathroom fixtures, and they were moved, so they gave us that great gift. Thank you Silica!</div>
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Onto Lucy's bedroom... which has kind of become our living room. Lucy is loathe to leave her room. Thankfully, it's a lovely, convenient environment to be in ;)</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigiRrkhDEa6aAzMHuvMSSUPNfiOKhLIrk1MRsgVgiY_kvBS1Ti5cLzowR8xmgPqBjVo_5cXCV1-my7S_ly6HLHqnm4G6es-ZIYGU6xbfl67XZoMmoJLzUaL9NVUjae8LNZC85U8lhZlNY0/s1600/new+room14.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigiRrkhDEa6aAzMHuvMSSUPNfiOKhLIrk1MRsgVgiY_kvBS1Ti5cLzowR8xmgPqBjVo_5cXCV1-my7S_ly6HLHqnm4G6es-ZIYGU6xbfl67XZoMmoJLzUaL9NVUjae8LNZC85U8lhZlNY0/s1600/new+room14.jpg" height="240" width="320" /></a></div>
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<span style="font-size: x-small;">Decorated for Christmas, obviously. Doll and kitchen and dress-up central!</span></div>
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<span style="font-size: x-small;">Frames, mirror, sconces, yellow doll cabinet - all from resale shops,</span></div>
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<span style="font-size: x-small;">refurbished and painted by yours truly. The vanity belonged to </span></div>
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<span style="font-size: x-small;">Lucy's great great grandmother :)</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLq6eHqOcgpKQuzk_GHFRvD9vwCWZLpvSnfi0T17v7dXe7zNxDnwMLldP-PE8Fcp8KinehXdzvamULQWbAdUeHsK9OHmvJdv9m9WYdyfMv8l22LpOdm26VfqupiOQMAvgWZTXWEqWsXAI6/s1600/new+room17.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLq6eHqOcgpKQuzk_GHFRvD9vwCWZLpvSnfi0T17v7dXe7zNxDnwMLldP-PE8Fcp8KinehXdzvamULQWbAdUeHsK9OHmvJdv9m9WYdyfMv8l22LpOdm26VfqupiOQMAvgWZTXWEqWsXAI6/s1600/new+room17.jpg" height="320" width="240" /></a></div>
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<span style="font-size: x-small;">The cabinets underneath hide medical supplies, so that </span></div>
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<span style="font-size: x-small;">the books and trinkets can take center stage - as </span></div>
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<span style="font-size: x-small;">they should in a little girl's room.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhusz5ck7M1IOgXbERCk_YeUA61YGniOyBhqqPek70Jt2UsRq5XUyHBWTXCmLyOau0dN3vszLzIaZEIpgxUpog_3dsjTHkUjMj5yRqaGYQoqS_SQhvz6SJaywdGov6lNCPmSvhyftUsX3lB/s1600/new+room1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhusz5ck7M1IOgXbERCk_YeUA61YGniOyBhqqPek70Jt2UsRq5XUyHBWTXCmLyOau0dN3vszLzIaZEIpgxUpog_3dsjTHkUjMj5yRqaGYQoqS_SQhvz6SJaywdGov6lNCPmSvhyftUsX3lB/s1600/new+room1.jpg" height="240" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXoesnsZPyQ3bUQct6uYT48g5_O2Qz83wkFe_eHr_GF3rM00FRh7SKjIkB9AP-hjsxsgY-kTEEH4R4yP50o1ZZLV1Zft7HOk-Z1W2toMSyZ8f3T968m5llLZb3E8IHKLaDWQiFnAJRcqZZ/s1600/new+room3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXoesnsZPyQ3bUQct6uYT48g5_O2Qz83wkFe_eHr_GF3rM00FRh7SKjIkB9AP-hjsxsgY-kTEEH4R4yP50o1ZZLV1Zft7HOk-Z1W2toMSyZ8f3T968m5llLZb3E8IHKLaDWQiFnAJRcqZZ/s1600/new+room3.jpg" height="240" width="320" /></a></div>
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<span style="font-size: x-small;">See? </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPEwU8FRo4kEMEcySw8MMG_LGlztKDLrHmvG5iX0VMKNKiOz6tpd8bUe3HXziRbmrPDoH3ilxwxk5VYIsCLUhzTh5gD_WD_uI8wgyL1ZUgaIFiCkaJoCyzulWjCFpayD65xBVzYyKReTgN/s1600/new+room19.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPEwU8FRo4kEMEcySw8MMG_LGlztKDLrHmvG5iX0VMKNKiOz6tpd8bUe3HXziRbmrPDoH3ilxwxk5VYIsCLUhzTh5gD_WD_uI8wgyL1ZUgaIFiCkaJoCyzulWjCFpayD65xBVzYyKReTgN/s1600/new+room19.jpg" height="320" width="240" /></a></div>
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<span style="font-size: x-small;">And you'd better believe that closet is crammed full ;)</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibntes9vr1qbvpK58p8KzBhy-r6mNEhj1Vm7ao3289gQkpk93dv2XJH-wsei1Yec53M-G5DraFlP-QBzctYZgFMpttoajRj3WdnK20EKRs8XQgexS-f0UiFND-Y9ZpVxyS9FWNz7YQDOfE/s1600/IMG_2232.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibntes9vr1qbvpK58p8KzBhy-r6mNEhj1Vm7ao3289gQkpk93dv2XJH-wsei1Yec53M-G5DraFlP-QBzctYZgFMpttoajRj3WdnK20EKRs8XQgexS-f0UiFND-Y9ZpVxyS9FWNz7YQDOfE/s1600/IMG_2232.JPG" height="320" width="240" /></a></div>
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<span style="font-size: x-small;">Doll furniture, all thrifted and painted by me. Who </span></div>
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<span style="font-size: x-small;">has the funds to pay for American Girl accessories? </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZ9jfdqMVqdNrK6fBqXWJtxRvnzK7DvMsNAX2gXhku3O-dib_mI_KRYHQPGSnpVXBbcDDpjvlpUOR7fRRT7BgHyFnc3L6izTBR7SCSSDMqjDWRAl4hOT_45Ktip1aMY6Lugc-kCXXhF3Hk/s1600/IMG_2033.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZ9jfdqMVqdNrK6fBqXWJtxRvnzK7DvMsNAX2gXhku3O-dib_mI_KRYHQPGSnpVXBbcDDpjvlpUOR7fRRT7BgHyFnc3L6izTBR7SCSSDMqjDWRAl4hOT_45Ktip1aMY6Lugc-kCXXhF3Hk/s1600/IMG_2033.JPG" height="320" width="240" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnqkZcWvUZvRAGeuarnggP_2-jHtDbilWdM66ChGqqY4MtxaXO_AD4veWTYFOBj3mxgGFgWFkWI2HMxasVyUwpUgpRWsgZ0D5wVNyQG2NIPfCkzYzAx-K5ogCSP53BKikWhn1DihapdrAt/s1600/IMG_2353.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnqkZcWvUZvRAGeuarnggP_2-jHtDbilWdM66ChGqqY4MtxaXO_AD4veWTYFOBj3mxgGFgWFkWI2HMxasVyUwpUgpRWsgZ0D5wVNyQG2NIPfCkzYzAx-K5ogCSP53BKikWhn1DihapdrAt/s1600/IMG_2353.JPG" height="240" width="320" /></a></div>
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<span style="font-size: x-small;">A little table for our side (thrifted and painted!), </span></div>
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<span style="font-size: x-small;">and Lucy's equipment in the custom shelving</span></div>
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<span style="font-size: x-small;">on the other side, hung so that we could put her current equipment cart,</span></div>
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<span style="font-size: x-small;">which we love so much, directly under the shelving unit. </span></div>
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<span style="font-size: x-small;">Slapped a coat of </span><span style="font-size: x-small;">paint on it and it fit right in!</span></div>
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<span style="font-size: x-small;"> The Cinderella painting is from her 5th birthday - she</span></div>
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<span style="font-size: x-small;">likes the old-school Disney movies best :)</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhf1NOEYc9hLas2zARcwUhLTDGkoiO_wNBc8KsAE5xxkYezZeYkkW53hyphenhyphenRLvxJ-N-U-HlKRvTPEmou3_y32aDGB-AB4RmKhpM2ezbqNI0FOeSGy-hx37_ro1y8_cZRmrjIaVyDI5wdg5EJG/s1600/IMG_2352.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhf1NOEYc9hLas2zARcwUhLTDGkoiO_wNBc8KsAE5xxkYezZeYkkW53hyphenhyphenRLvxJ-N-U-HlKRvTPEmou3_y32aDGB-AB4RmKhpM2ezbqNI0FOeSGy-hx37_ro1y8_cZRmrjIaVyDI5wdg5EJG/s1600/IMG_2352.JPG" height="320" width="240" /></a></div>
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<span style="font-size: x-small;">Storage under her bed, too - platform bed custom built, courtesy of </span></div>
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<span style="font-size: x-small;">Lucy's Grandpa Greg. And that bed crown? Thrifted, baby!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZ8ewKmcfe_n7NiFAZXDMdVSp63aipk3xGK79hyphenhyphenqRY_PU238exFFhsPY9GQQwU-J1jiwPu4NyVdLizACe0o_kXIqxWjBXN5mD0FIH_MFeRgZvxDCBhyd9vt-youI3r2nurIGviGfLWS2ic/s1600/IMG_1773.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZ8ewKmcfe_n7NiFAZXDMdVSp63aipk3xGK79hyphenhyphenqRY_PU238exFFhsPY9GQQwU-J1jiwPu4NyVdLizACe0o_kXIqxWjBXN5mD0FIH_MFeRgZvxDCBhyd9vt-youI3r2nurIGviGfLWS2ic/s1600/IMG_1773.JPG" height="240" width="320" /></a></div>
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<span style="font-size: x-small;">Storage for days...</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ78UNddqEeuuxFfY0TpTDYtWjR5f2iPihvloIxct2qIu_u_iQn7rAhfzCwTHdW62l3Lv7OcJLmyACB2m0FyWaiz-0J0s-05UyG9AMFqddTiltS0T-OK0ht-v0vathZC9T6JvW4uJ67CqL/s1600/IMG_1779.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ78UNddqEeuuxFfY0TpTDYtWjR5f2iPihvloIxct2qIu_u_iQn7rAhfzCwTHdW62l3Lv7OcJLmyACB2m0FyWaiz-0J0s-05UyG9AMFqddTiltS0T-OK0ht-v0vathZC9T6JvW4uJ67CqL/s1600/IMG_1779.JPG" height="320" width="240" /></a></div>
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<span style="font-size: x-small;">...with a view!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6aViRMsKxgzITC53vZkbk7I_6b9D9ybAMSAwyARb0D6I4cVDE2tGOB4pbPFRMux99796-BXtKJ_cvfM10Earq4bebAeEHQs2OGybx8LOA46BPxt348QNrGcPwfNsQQSyTAKWtjAST2tez/s1600/IMG_1769.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6aViRMsKxgzITC53vZkbk7I_6b9D9ybAMSAwyARb0D6I4cVDE2tGOB4pbPFRMux99796-BXtKJ_cvfM10Earq4bebAeEHQs2OGybx8LOA46BPxt348QNrGcPwfNsQQSyTAKWtjAST2tez/s1600/IMG_1769.JPG" height="320" width="240" /></a></div>
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<span style="font-size: x-small;">The window seat is so great! Bert loves it too :)</span></div>
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<span style="font-size: x-small;">Since Lucy's inside so often, it's wonderful</span></div>
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<span style="font-size: x-small;">for her to have a nice big view of the outside world - especially the work</span></div>
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<span style="font-size: x-small;">done by Backyard Landscapes! More on that later :)</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbzd7ghg69ffcIcbhDMCYtHSVQOgw_ww9Mhsoq9qTqFLTz3NdyWw-z0B3r4hs0UgmQRcyEzTeQYUXYNEw7r-qLSYfQmWf8_BDadvKlNx2KcOawvHnHLbKu6J8XxNftwbYX6uZ2m0O60guQ/s1600/IMG_2405.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbzd7ghg69ffcIcbhDMCYtHSVQOgw_ww9Mhsoq9qTqFLTz3NdyWw-z0B3r4hs0UgmQRcyEzTeQYUXYNEw7r-qLSYfQmWf8_BDadvKlNx2KcOawvHnHLbKu6J8XxNftwbYX6uZ2m0O60guQ/s1600/IMG_2405.JPG" height="240" width="320" /></a></div>
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<span style="font-size: x-small;">It filled up quickly :)</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2weZN_YaZtn_Xa8BOtOO2pX0wHfMGd94yi98Vg5bf_plDi3ZXwjf-obvM9p1snVGwow2E80fdzBeiCzlobc89J5323wNEQTW9oBTWS8qU8eV-388A6NUkFuhrhAk3DhGIYqFFahTsuTHI/s1600/IMG_3247.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2weZN_YaZtn_Xa8BOtOO2pX0wHfMGd94yi98Vg5bf_plDi3ZXwjf-obvM9p1snVGwow2E80fdzBeiCzlobc89J5323wNEQTW9oBTWS8qU8eV-388A6NUkFuhrhAk3DhGIYqFFahTsuTHI/s1600/IMG_3247.JPG" height="239" width="320" /></a></div>
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<span style="font-size: x-small;">And was fun to decorate for Christmas!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3fkUFh0rfkF7VFu4AnD-qizn-jnlcfIUuPuj6_lxVSAiIdCeMXQn3B3X_N99kCGJmFwB2HmhhFs4cUMvGZXO2urY92ChEe2qRdHCA6YPJPvE3LUuOR9hgKcJKqB-xhQ4xzcAgMcbnQ5QC/s1600/IMG_2132.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3fkUFh0rfkF7VFu4AnD-qizn-jnlcfIUuPuj6_lxVSAiIdCeMXQn3B3X_N99kCGJmFwB2HmhhFs4cUMvGZXO2urY92ChEe2qRdHCA6YPJPvE3LUuOR9hgKcJKqB-xhQ4xzcAgMcbnQ5QC/s1600/IMG_2132.JPG" height="320" width="240" /></a></div>
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<span style="font-size: x-small;">It's Bert's favorite perch :) Especially after Lucy's Grandma Lauri</span></div>
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<span style="font-size: x-small;">made a bench cushion!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7o2OrnlJ_NZp7TCFZib8XHnxC0m7ORGx0cPbPKN7XWwz8TO0USGkp-65syTiwMi-NWAk8y9-x4xsY_na-vdrDQrDfRM1n87wpivbiWmCdli9Ms4YIzAHZVfIMl0OZRHe3GUA2GfQzcJWt/s1600/IMG_2381.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7o2OrnlJ_NZp7TCFZib8XHnxC0m7ORGx0cPbPKN7XWwz8TO0USGkp-65syTiwMi-NWAk8y9-x4xsY_na-vdrDQrDfRM1n87wpivbiWmCdli9Ms4YIzAHZVfIMl0OZRHe3GUA2GfQzcJWt/s1600/IMG_2381.JPG" height="320" width="240" /></a></div>
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<span style="font-size: x-small;">That silver pumpkin was a jack-o-lantern, found by</span></div>
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<span style="font-size: x-small;">Lucy's OT. Some papier mache and silver paint, and</span></div>
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<span style="font-size: x-small;">it's Cinderella's carriage, post-ball.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHfRV4cnb5ODU71cbyD8hvQhfNIQivtQ32pA_7eXtpm8wiKG95KsXzQXI8KnP8R_b2_h9CPU9uzISX1A1XfzqqCG1YBY66Sd8fihnHQqqE7yC24dq5c7c3ZBq-ArsnTjkOhRdBYGemyrkj/s1600/IMG_2078.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHfRV4cnb5ODU71cbyD8hvQhfNIQivtQ32pA_7eXtpm8wiKG95KsXzQXI8KnP8R_b2_h9CPU9uzISX1A1XfzqqCG1YBY66Sd8fihnHQqqE7yC24dq5c7c3ZBq-ArsnTjkOhRdBYGemyrkj/s1600/IMG_2078.JPG" height="239" width="320" /></a></div>
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<span style="font-size: x-small;">Cinderella lamp? A dollar, at a rummage sale. The doily was</span></div>
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<span style="font-size: x-small;">$1.50. I think you can see the trend that's developing. </span></div>
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<span style="font-size: x-small;">Shop second-hand!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLe_MBQlCnvwR2BgByBhqtTYSbo9_w0VlNnDe-WC6ycLfDd9_hKWf9ZGCYVSThY7JVuKdsP3vCF6HnJjqS48XP_M6MPfxEVu525gNXeurvpv5Alkt-CamugeO-ehwcGCRPBPIMXooAHkXc/s1600/IMG_2126.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLe_MBQlCnvwR2BgByBhqtTYSbo9_w0VlNnDe-WC6ycLfDd9_hKWf9ZGCYVSThY7JVuKdsP3vCF6HnJjqS48XP_M6MPfxEVu525gNXeurvpv5Alkt-CamugeO-ehwcGCRPBPIMXooAHkXc/s1600/IMG_2126.JPG" height="320" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJXptKvRrFL-lWAd82qrpgCkEB2tsIiwCvHTzIF83kcQXgqHu95xpu7Wxazal67jWEsq31EsRKYgMh9EsJj1-zeK9fk8JOgBWwiwxAbJopPa34nroSc1Dofcx3ubZsW2Lk4Q0UTVGWBiPc/s1600/new+room5.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJXptKvRrFL-lWAd82qrpgCkEB2tsIiwCvHTzIF83kcQXgqHu95xpu7Wxazal67jWEsq31EsRKYgMh9EsJj1-zeK9fk8JOgBWwiwxAbJopPa34nroSc1Dofcx3ubZsW2Lk4Q0UTVGWBiPc/s1600/new+room5.jpg" height="240" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbTNlNTpovbi7N0vpA2qNfoFG9ntmdS94qtu5ioUio5Nm2XBkF-pXQMwCmPNBAHDLSHf70Ei-cW231_h7zcwUlIhpuQ3CzZw7s777nBcgDk6LqC-i2Uxfi87eYjDXl8bTmn9iSciW1ln9G/s1600/new+room6.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbTNlNTpovbi7N0vpA2qNfoFG9ntmdS94qtu5ioUio5Nm2XBkF-pXQMwCmPNBAHDLSHf70Ei-cW231_h7zcwUlIhpuQ3CzZw7s777nBcgDk6LqC-i2Uxfi87eYjDXl8bTmn9iSciW1ln9G/s1600/new+room6.jpg" height="320" width="240" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGHGVukGtf3MplS2wVyF9jXFB919dxU1yYqSCULTm2sIv3-HrvP3hv6ZvVu6ZvPttquYKOrqkMwTCmJYCISHQmf3R8JfcTGnu4d41aD2HyHlOJ95jMsQ7L_zyPtbXdVAN73sCab1a46sAI/s1600/new+room7.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGHGVukGtf3MplS2wVyF9jXFB919dxU1yYqSCULTm2sIv3-HrvP3hv6ZvVu6ZvPttquYKOrqkMwTCmJYCISHQmf3R8JfcTGnu4d41aD2HyHlOJ95jMsQ7L_zyPtbXdVAN73sCab1a46sAI/s1600/new+room7.jpg" height="320" width="240" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwvphI4XNbYeABMjZKmM-QXyT3wnJ6WBJ44tZ4iBA6f-T220bWUyTvQJISCctuKyVedDy7JUey4Mz7iG1wGeOdl8I-sfb14tWWrcSzwX109aLg5_vHHXKtUO1jhuUA-0DLRq_GEDPClTy5/s1600/new+room15.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwvphI4XNbYeABMjZKmM-QXyT3wnJ6WBJ44tZ4iBA6f-T220bWUyTvQJISCctuKyVedDy7JUey4Mz7iG1wGeOdl8I-sfb14tWWrcSzwX109aLg5_vHHXKtUO1jhuUA-0DLRq_GEDPClTy5/s1600/new+room15.jpg" height="320" width="240" /></a></div>
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<span style="font-size: x-small;">It becomes an addiction after awhile - seeing something</span></div>
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<span style="font-size: x-small;">and figuring out how you can use it for something else.</span></div>
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<span style="font-size: x-small;">Everything here was painted, and found at the thrift shop.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAkp6_CExkgC7b1WU8YvpFGXHE6YAzw5jzyhGSeprjnzPIUPw29jjVrXIj-n-XIeQIwLIxrSoPeeuA9VTB_FzY2vtsQTbJa5JLQGImGuw8mESqc7PSXEPn4yp8TBorDvz9Zl5hgDW4lfMp/s1600/new+room16.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAkp6_CExkgC7b1WU8YvpFGXHE6YAzw5jzyhGSeprjnzPIUPw29jjVrXIj-n-XIeQIwLIxrSoPeeuA9VTB_FzY2vtsQTbJa5JLQGImGuw8mESqc7PSXEPn4yp8TBorDvz9Zl5hgDW4lfMp/s1600/new+room16.jpg" height="320" width="240" /></a></div>
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<span style="font-size: x-small;">Lucy's doll closet looks like mine!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7PWOo-FmLZNc3waobGoBDr2roTSs9uA1iWWaLRnu24p3o2LAbbf2PLt6qLcsUoAHQM7RGnvHUdWsn81CBOetNEEBg0UtIkukF5wR0Bel6MQANZ4m5grFA2ip-qouD9Ja2AKdDc_MHLGK-/s1600/new+room12.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7PWOo-FmLZNc3waobGoBDr2roTSs9uA1iWWaLRnu24p3o2LAbbf2PLt6qLcsUoAHQM7RGnvHUdWsn81CBOetNEEBg0UtIkukF5wR0Bel6MQANZ4m5grFA2ip-qouD9Ja2AKdDc_MHLGK-/s1600/new+room12.jpg" height="320" width="240" /></a></div>
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<span style="font-size: x-small;">This I bought on eBay, but it was too perfect to pass up!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh02dx_UeHH2kMiQ1vXYJjf6kQnfDhcr1h1S7Q-YWsxnWeHg4c7sZd6coGjwGKl9mF5qOSSx9kMiGwSnFK6nQhRFL_deYmTQkoKycfuU0nk5-27SGFz0QzQ9sklgrbJposbu4I0XrVuuuG-/s1600/new+room8.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh02dx_UeHH2kMiQ1vXYJjf6kQnfDhcr1h1S7Q-YWsxnWeHg4c7sZd6coGjwGKl9mF5qOSSx9kMiGwSnFK6nQhRFL_deYmTQkoKycfuU0nk5-27SGFz0QzQ9sklgrbJposbu4I0XrVuuuG-/s1600/new+room8.jpg" height="320" width="240" /></a></div>
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MORE OUTLETS!</div>
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<span style="font-size: x-small;">Any parent of a medically fragile kid can appreciate</span></div>
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<span style="font-size: x-small;">how exciting this is.</span></div>
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<span style="text-align: left;">Obviously, Lucy is thrilled with her new digs. There is an abundance of things to look at, and plenty of room to play.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNsgvvZtTON_kN4VGGSxVPnU4IkZo8yKe_exY61juHI8Rcb5ji_-uzg6aUUnvLK-6oM_fChQR64S1Pr8GOHfJpthDLlZQw5kQrRklYTpJuy_sXIaZatZmIOGMRwXeflw4k6crvY9FH_h_0/s1600/IMG_2229.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNsgvvZtTON_kN4VGGSxVPnU4IkZo8yKe_exY61juHI8Rcb5ji_-uzg6aUUnvLK-6oM_fChQR64S1Pr8GOHfJpthDLlZQw5kQrRklYTpJuy_sXIaZatZmIOGMRwXeflw4k6crvY9FH_h_0/s1600/IMG_2229.JPG" height="320" width="240" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoLZCLy2E3tWFlxUuQ3-HHRFznQNkxiXZk0kYokv3Acc0JKN8XdFsVO2yBWVYZ-skt7x_MaoE_yNpZI2y6hMOVJbA5Y9Db0mnag-5Uzeckem-5PjqvduqbmPu59d32lVmzODl38ksJWTJX/s1600/IMG_2404.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoLZCLy2E3tWFlxUuQ3-HHRFznQNkxiXZk0kYokv3Acc0JKN8XdFsVO2yBWVYZ-skt7x_MaoE_yNpZI2y6hMOVJbA5Y9Db0mnag-5Uzeckem-5PjqvduqbmPu59d32lVmzODl38ksJWTJX/s1600/IMG_2404.JPG" height="320" width="320" /></a></div>
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<span style="font-size: x-small;">She's a very good mama...</span></div>
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<span style="font-size: x-small;">...a silly beauty queen (the first picture here is of</span></div>
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<span style="font-size: x-small;">her laughing about the lid on the glass compote</span></div>
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<span style="font-size: x-small;">slamming up and down)...</span></div>
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<span style="font-size: x-small;">...and she likes to keep her doll friends dressed</span></div>
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<span style="font-size: x-small;">in the latest fashions :)</span></div>
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Lucy also has a school room, that was part of our original house, that she rarely gets into for the time being. We're still hoping that once warmer weather hits, she'll be less anxious, and that if we can get her sleeping better again, she'll have more energy and drive to get out into the rest of the house more often. Because really, who wouldn't want to pick out a book from here?</div>
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She also has a deck! We needed to balance her side of the addition with our side (which consists of our bedroom - no, there aren't pictures, it's essentially a mattress on the floor at this point - and the washroom) size-wise, so we had them put on a deck that the ramp could come off of. It's directly across from the door to her room, so I'm hoping for a temperate summer and lots of afternoons spent on it, enjoying the serenity of her Wish project!</div>
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<span style="font-size: x-small;">I recommend doing your painting *before* screens and </span></div>
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<span style="font-size: x-small;">carpets are installed... this probably took half a day longer</span></div>
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<span style="font-size: x-small;">than it needed to. But it's so much brighter! The blue</span></div>
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<span style="font-size: x-small;">ceiling was a must :)</span></div>
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Painting was something we did all on our own, to cut out that cost. It had been about 7 years since we moved in and painted this whole house, and I had forgotten how labor intensive painting is. I got all the priming done in one day, because we had just a long weekend to get it all done so the project could keep moving. I went to bed with aching hands and woke up with swollen ones! I worked day and night, with my mom during the day and Noah at night after Lucy was asleep, and we cranked it out. It was so helpful that Dan Valle let us in to do it before the flooring, fixtures and trim were in - not a lot to edge around! Lucy got to choose the color for her bedroom; at least, she got to choose from some choices that were predetermined ;)</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtuENxfAet_txjSUV6YNfgP5OSdVOfLznkEYaOFuhZR85_2jX8XuJWUGZ3nJ_ZDZh_TWJo-Ced9i-97jKrFNq7Bd84sQxeaBF7T3DLbRrHSnVdoDuEmcgJLDvjoiq3x5byWlLpq7YWsX_l/s1600/IMG_0260.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtuENxfAet_txjSUV6YNfgP5OSdVOfLznkEYaOFuhZR85_2jX8XuJWUGZ3nJ_ZDZh_TWJo-Ced9i-97jKrFNq7Bd84sQxeaBF7T3DLbRrHSnVdoDuEmcgJLDvjoiq3x5byWlLpq7YWsX_l/s1600/IMG_0260.JPG" height="320" width="240" /></a></div>
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<span style="font-size: x-small;">Choices, choices!</span></div>
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<span style="font-size: x-small;">Priming is hugely unfun.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvvokCAbud4y3-kTYjgW8-HHIHNh1JEr3KUR42aAEkpd1fm9VC_jle23PYmM58yKDTV3o_9oAFIsVUOVmBmtiq0k4RztzWSdElydmXiYQZwV5de8yk3wxUr-w2pjQm37oMeRVMoCSQd_t3/s1600/IMG_0880.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvvokCAbud4y3-kTYjgW8-HHIHNh1JEr3KUR42aAEkpd1fm9VC_jle23PYmM58yKDTV3o_9oAFIsVUOVmBmtiq0k4RztzWSdElydmXiYQZwV5de8yk3wxUr-w2pjQm37oMeRVMoCSQd_t3/s1600/IMG_0880.JPG" height="320" width="320" /></a></div>
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<span style="font-size: x-small;">At least our paint from Luedtke Lumber went on smooth and vibrant!</span></div>
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<span style="font-size: x-small;">Date night :) We realized when painting that night, that it was the</span></div>
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<span style="font-size: x-small;">farthest we've ever been away from Lucy, both at the same time - she was </span></div>
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<span style="font-size: x-small;">upstairs in her old room, sleeping, and we had her monitor :)</span></div>
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<span style="font-size: x-small;">Stripes on the ceiling. I've likened them to having a baby; you end up </span></div>
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<span style="font-size: x-small;">with something really cute and fun, but the pain and anguish of getting there</span></div>
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<span style="font-size: x-small;">makes you want to wait awhile before you try it again ;) Thanks to</span></div>
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<span style="font-size: x-small;">Lucy's Grandpa Jim and Grandma Jeanne for helping with those!</span></div>
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So fall came, and Lucy was still struggling a little with her "cold" and allergies, but we managed to get out a couple of times and enjoy the leaves changing; Lucy loves those walks, so we didn't want to miss the season entirely.</div>
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Valle Construction wrapped up the addition in the first week of October, and then it was game on for moving in - we got the bedrooms shuffled downstairs in one weekend, and then spent a few weeks filling everything else in. While we were moving things around inside, our backyard was getting moved around too! DuWayne from <a href="http://www.backyardwaterscapes.com/" target="_blank">Backyard Waterscapes</a> had agreed to work with Make-a-Wish to bring Lucy's Wish to life - a backyard water feature and birdwatching station. We were stunned when we took Lucy to Menards over the summer and she was completely enraptured with the waterfalls in their garden center, each time. DuWayne got right to work! </div>
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<span style="font-size: x-small;">Sorry, not many pictures of the process - I </span></div>
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<span style="font-size: x-small;">didn't want DuWayne to feel like we were constantly</span></div>
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<span style="font-size: x-small;">spying on him out of Lucy's gigantic window :)</span></div>
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<span style="font-size: x-small;">Naturally, Lucy LOVED it! She can hear the water</span></div>
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<span style="font-size: x-small;">burbling from her side window :)</span></div>
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We took Lucy out to admire her new water feature on a day that was mildly breezy. Lucy is not a fan of the wind - she feels like it takes her breath away, and hyperventilates when she feels it. We thought that our fenced yard, with trees around it, was enough to keep the wind down, and insisted that she would be fine, though she was a bit cranky about it. She was not fine. A huge gust of wind hit her in the face, and she sucked in and started to choke. Noah was just inside, bringing her bipap out because she had already been fussing, so I suctioned her as best I could while watching her gums turn grey, and scooped her up and ran her inside. We worked on her for a bit and got her back up from oxygen saturations in the 60s, put her on her bipap, and let her rest while we called her pulmonologist about her extremely low heart rate. That episode appears to be the catalyst for Lucy's ongoing anxiety, and rightly so. We told her she would be okay, and she wasn't. How can she believe us now, any time we tell her she will be okay? It's something we're all still working to correct. Lucy was so strong for so long, and we underestimated how much this last illness had taken out of her, and made an obvious error in judgement taking her outside that day, without her bipap on. So the next weekend, after talking to her over and over about how the bipap would help her be able to breathe, no matter what it was like outside, we tried again.</div>
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Lots of oohing and ahhing! DuWayne thought of everything, and it turned out absolutely beautiful :)</div>
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<span style="font-size: x-small;">We were a bit confused as to why the cement wasn't poured up to</span></div>
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<span style="font-size: x-small;">the bottom of the ramp, as was DuWayne,</span></div>
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<span style="font-size: x-small;"> but we hope to have that rectified over the summer.</span></div>
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<span style="font-size: x-small;">Thanks DuWayne and Katie! </span></div>
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<span style="font-size: x-small;">And thanks to Make a Wish, and our Wish granters,</span></div>
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<span style="font-size: x-small;">Judy and Linda!</span></div>
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<span style="font-size: x-small;">Naturally, Lucy needed a special Wish reveal outfit :)</span></div>
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<span style="font-size: x-small;">Right in front of Lucy's window, where she can watch </span></div>
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<span style="font-size: x-small;">them from her bed!</span></div>
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<span style="font-size: x-small;">Which she does :)</span></div>
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I did managed to nonchalantly slide Lucy out onto her deck one very calm night, sans bipap, for about 10 minutes, before she decided she wanted to go back in. Baby steps are everything.</div>
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I love Christmas, so we got into that not too long after we were all moved into Lucy's suite :)</div>
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<span style="font-size: x-small;">Lucy gets to test the Christmas lights every year with her switch :)</span></div>
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<span style="font-size: x-small;">We dressed up Bert for Christmas too :) He </span></div>
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<span style="font-size: x-small;">loves dog clothes!</span></div>
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Lucy also got used to a new mask over the fall, which is good because if she wants to wear it more, this one works a little better with her glasses, and also changes up the pressure points on her face. Since her favorite one is discontinued, it's good that she will wear another from time to time!</div>
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Lucy had another eyegaze trial over the fall, and was a bit more cooperative than the last go-round. We'll be submitting paperwork soon, and we're optimistic that her insurance will approve it. Which will be great, so she can tell us no and laugh at us all of the time :) </div>
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There has also been a lot of general silliness and snuggling going on. Lucy is a very goofy little girl, and her favorite thing is for people to be silly with her :)</div>
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<span style="font-size: x-small;">Immobility doesn't mean she can't give hugs :)</span></div>
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<span style="font-size: x-small;">Lucy got to dump the water on Daddy for the ALS</span></div>
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<span style="font-size: x-small;">ice bucket challenge!</span></div>
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<span style="font-size: x-small;">Giving Daddy coughs after hers were done :)</span></div>
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<span style="font-size: x-small;">We had a new room photo shoot when we moved in :)</span></div>
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There are so many thank yous to say! We fundraised for this addition for quite awhile. Brat frys, rummage sales, sewed items, golf outings, restaurant dinners, raffles and auctions. We had donations from SMA groups, we had donations from individuals - every single dollar, every single penny, helped us. There is no way I will be able to recognize everyone who helped or donated specifically, but I'd like to mention a few!</div>
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Rick and Pat Miller of Culver's Fond du Lac and Oshkosh Restaurants, along with the co-owners of each of Fond du Lac's Culver's locations</div>
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Marjorie Trew-Munson and Devin Munson, and their entire family</div>
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Merry Damrow</div>
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<a href="https://www.facebook.com/TheLexxHowellFoundationForSMA" target="_blank">The Lexx Howell Foundation for SMA</a>, who made up the large difference we needed to make the initial purchase of the additional property</div>
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<a href="http://www.marshallsmiles.com/" target="_blank">Marshall's Miles</a></div>
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<a href="http://unite4peyton.com/" target="_blank">Unite 4 Peyton</a></div>
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<a href="http://www.tecre.com/" target="_blank">Tecre Co, Inc</a>., for donating not only funds but materials like the awesome magnets that we sold</div>
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And thank you to the hundreds who donated online or in person, who attended our events, and bought our wares! You made a difference; you can see the outcome of your generosity in the smile on Lucy's face :)</div>
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Thank yous are in order for our building team, as well. We were blessed to have the ability to use <a href="https://www.facebook.com/pages/Valle-Construction/148852678491576" target="_blank">Valle Construction</a> as our contractor and builder. Dan and Marcia Valle made the whole process seamless, and took care of so much coordination, taking the weight off of me - I'm not exactly known for being prompt when it comes to phone calls and organizing ;) They also gave us a generous discount! </div>
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<a href="http://ww3.truevalue.com/0323/Home.aspx" target="_blank">Luedtke Lumber</a> of Lomira provided many of the supplies for Lucy's addition, at a discount as well. Phil, Jackie, and Don Luedtke have treated us like family (and in Don's case, it isn't a stretch!), from the very beginning of our fundraising, when we were raising money for research. They have donated money, time and prizes for all of our events and for all of our endeavours. We are blessed to know them, and Lucy is fortunate to call Don uncle :)</div>
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Jim Emmer really brought my ideas to life in his blueprints, and generously donated his services. I think those blueprints will eventually be framed on the wall; they were the start of our dream for Lucy!</div>
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Guy Fox and the team of inspectors were wonderful with being accommodating when they needed to come by; Lucy can't exactly be left alone, and they were understanding of that, even going so far as to remove shoes and coats and don masks when we got closer to illness season.</div>
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Our thanks also to the other businesses who made this addition come to life for Lucy; all were hard working and helped ease the financial burden where they could. Their generosity is just as valuable as all of the donations!</div>
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<a href="http://finkelectric.weebly.com/" target="_blank">Fink Electric</a></div>
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<a href="http://fondyheating.com/" target="_blank">Fondy Heating and Air Conditioning</a></div>
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<a href="http://www.mascocs.com/citywideoshkosh/" target="_blank">City Wide Insulation</a></div>
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<a href="http://www.hechmc.com/" target="_blank">Hechimovich Masonry</a></div>
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<a href="http://tcutilityconstruction.com/" target="_blank">Town and Country Underground</a></div>
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This post is months overdue, and for that I am sorry! Lucy's anxiety, stress, and poor sleep patterns have meant the same for her parents. If I forgot to mention anyone in our thanks, my deepest apologies. My memory was short to begin with, and to call it poor after weeks and weeks of sleep deprivation would be a generous statement ;) I just hope that everyone who donated, or prayed, or helped, feels like they truly, actually made a difference in our life, because they did. Every. single. person. No matter how much you did; it changed the course of our journey toward this, and helped us get there all the faster, and for that we will be forever grateful.</div>
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Last, but never the least, we are grateful to God. We purchased this house almost on a whim; Noah had gotten off of work early one day, I found the listing, we drove by that afternoon, and set up a viewing with our realtor. We found that there were other offers in, and so we put in ours - and won, obviously! If you've read this blog previously, you know that the house next to ours was purchased by someone, gutted with plans for renovation, and then burned up. If we hadn't been in the location we are in, where the lot next to ours became vacant, I'm not sure how we would have managed the addition - that space was vital, as all the heavy machinery, vehicles and equipment came in and out each day directly on that property. While I understand we have free will, I do believe that God sees the path before us, and I know that He saw all of this as we signed our mortgage papers. Lucy loves God so much, and I know He loves her right back - He shows us that through miracles of "coincidence," and through each and every one of you, who support and love and pray for us.</div>
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Thank you will never be enough, but words are all we have. God bless you all.</div>
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<br />Lucy's Mamahttp://www.blogger.com/profile/01276610711792112286noreply@blogger.com1tag:blogger.com,1999:blog-3128424260492554822.post-71361086227362803132014-08-27T07:52:00.001-07:002014-08-27T07:52:48.086-07:00Lucy's Rummage Sale!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDf4Hen1TFg0jODTUMNlbvKsc7QWVWl_WTfqjn51uWpFGF2CH72T-CcMdlvnyPWedh3KeWODY2giZeLEO1pQTVMSdrwbKYJXmbdeijPgdHhQ1W20aVPfX62mhsx8NddDruENMqJrbG78tD/s1600/IMG_0327.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDf4Hen1TFg0jODTUMNlbvKsc7QWVWl_WTfqjn51uWpFGF2CH72T-CcMdlvnyPWedh3KeWODY2giZeLEO1pQTVMSdrwbKYJXmbdeijPgdHhQ1W20aVPfX62mhsx8NddDruENMqJrbG78tD/s1600/IMG_0327.jpg" /></a></div>
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This was the result of months of the Munson clan using their own homes for rummage sale storage. This was the result of our wonderful Church of Peace employee Norberto coming in on his day off to open the church and help us set up. This was the result of almost 6 hours of unloading and organizing. This was the result of the generosity of so, so many, both with donations and time!<br />
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And after a full day of selling, with the vast majority of items priced at a quarter, this was the financial result:<br />
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Eight hundred eighty-six dollars!</div>
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There were some outright donations as well as the purchases, and a lemonade stand in the afternoon :) The deals... OH, the deals!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQwAIY86RpEn_dWOSNaq8_lJpoaLmlv5QwhDhgtoRS7f7KCdsbJ2NsibGnQBJMO3hfoI58KW1HaRzGndUwTvdQyUwMG_XJmiwzDO-mojoZdTg-tCa22OaF2-c8SxtOsbaIIbl-P0z2xn0H/s1600/IMG_0328.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQwAIY86RpEn_dWOSNaq8_lJpoaLmlv5QwhDhgtoRS7f7KCdsbJ2NsibGnQBJMO3hfoI58KW1HaRzGndUwTvdQyUwMG_XJmiwzDO-mojoZdTg-tCa22OaF2-c8SxtOsbaIIbl-P0z2xn0H/s1600/IMG_0328.jpg" /></a></div>
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It was definitely a "dig and hunt" sale - which is my very favorite kind! The lovely ladies who busted their butts setting this shindig up got first dibs, and there were some fantastic finds! Remember that for next year, when we're looking for volunteers ;) I found a load of goodies, both that night and the next day during the sale. Since it'd be pretty unseemly of me to "buy" things at a rummage sale benefiting our family, my $25 payment will be made to the <a href="http://thegsf.org/home/" target="_blank">Gwendolyn Strong Foundation</a>.<br /><br />This fat stack of cash has been deposited in our savings for the addition, and will really help take a chunk out of the unexpected tub expenditure. We're also in the process of applying for a grant from a wonderful SMA organization, <a href="http://www.unite4peyton.com/" target="_blank">Unite 4 Peyton</a>, to help cover a portion of the tub. </div>
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A sweet pin that my father-in-law snagged for me from the sale :)</div>
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Things always work out the way they do for a reason; the man making Lucy's tub is so kind, and the tub is going to be phenomenal, besides being just perfect for Lucy. The rest of the addition is going to be just the same.</div>
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We've also started discussions with Make-a-Wish for Lucy's wish: a backyard makeover, with a waterfall water feature, concrete walkway, and pergola seating area. We contacted Backyard Waterscapes, and Dwayne came out to our house to check out the area. He said he already has some ideas! It's going to turn our yard into a special oasis for our girl - one that she will be able to enjoy throughout the years to come. Please pray that Make-a-Wish completes the project the way we have envisioned it!</div>
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And we're really excited about all the steam this ALS ice bucket fundraiser train has gained! ALS is extraordinarily similar to SMA, so we understand the urgency of research. <a href="https://www.youtube.com/watch?v=VhAxaQoObCk" target="_blank">Here</a> are our videos :)</div>
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In closing, I will leave you with a bunch of random Lucy photos that an app on my phone decided to import back into my photo album yesterday!</div>
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Hoping that inside of a month or so, we'll be able to share our completed addition with you all! Thank you so much for your thoughts, prayers, and donations - you are changing Lucy's life!</div>
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<br />Lucy's Mamahttp://www.blogger.com/profile/01276610711792112286noreply@blogger.com0tag:blogger.com,1999:blog-3128424260492554822.post-91469894941586630482014-07-30T15:15:00.000-07:002014-07-30T15:15:59.720-07:00Rough spot for LucyFirst of all, Lucy is okay.<br />
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Yesterday afternoon, I was giving Lucy a bath, and she was having a hard time controlling her secretions. I suctioned her, but I just couldn't get her clear. I snatched her out of the bathtub, and tried again to clear her with suction on her bathroom bench. She was moving air, but hitching, and I didn't have her pulse ox on since she was in the tub, so I grabbed her unceremoniously and ran down the hallway to her cough assist and pulse ox.<br />
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I had thrown her old g-tube extension away, and was going to put a fresh one on after her bath, so I hooked her up to her pulse ox and fished a new extension out. By the time her pulse ox was reading, it said her oxygen level was at 90. Not great, but not life-threatening on its own, and it was holding steady. <br />
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I got her extension hooked up, vented her, and coughed and suctioned her. Her numbers dipped a bit lower, but I kept working until she was cleared and her numbers were better, then dressed her and put her on bipap. She was worn out, and was quiet for the first 15 minutes or so of her bipap time, then perked up a little.<br />
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When I was relaying this to Noah, I told him that I wasn't sure if I should have taken the time to vent her, or proceeded to cough her without the vent. ("Venting" Lucy involves hooking up her gastronomy button to a tube, and opening the tube, to allow air to escape her stomach, avoiding pressure.) I felt I had done the right thing in venting her, since having too much pressure in her stomach while being coughed could lead to reflux or vomit. It had never happened in all of her 4.5 years since her g-tube/nissen surgery, but better safe than sorry, right?<br />
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Boy howdy, is that the truth.<br />
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Today I was doing Lucy's morning treatment, and we had just finished her second round of coughs. I unhooked her venting syringe and pushed her IV pole away, getting ready to put her up to drain. She started to hitch a little, so I paused, and thought, "Oh, one cough should be fine." Turned it on, and coughed her. We had coughed her without venting several times before we really knew better, and I assumed just one would be okay. <br />
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You know what they say about the word "assume."<br />
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Big mistake.<br />
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The inhale comes first, and on that inhale, I heard a HUGE rush of air flood her stomach. I knew that wasn't good. After the exhale, I pulled the mask away - and out ran a dribble of yellow from her mouth. Her formula. The cough had pushed air in her stomach, and pulled her food up past her nissen, which is a surgery she had to prevent reflux and vomiting. It's never happened to Lucy before, but it's not impossible, and several SMA children vomit and/or reflux around the nissen.<br />
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The formula was running out of her mouth - and Lucy wasn't breathing. Her eyes widened. Her airway was completely cut off. I suctioned. No air passing. I coughed again. Air rushed in her stomach once more, her airway blocked, but no formula came out. Suctioned again. No air passing, and now her numbers are dropping. Lucy looked terrified, and I had to decide to keep working on her as is, or take the precious seconds to re-hook up her vent. I told her what I was doing, why I had to, and hooked up the vent, depressing her stomach, which let tons of air out. I still wasn't hearing any noise from Lucy, and her face was dusky. Numbers were in the low 80s for O2, and I don't even know what her heart rate was at. I coughed and suctioned until finally she started to pass air. She started to cry. Music to my ears, and a horrible sound all at the same time, because I can't imagine how terrifying it is for her.<br />
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I re-started her treatment, to try to clear out any stomach contents that she may have aspirated. Stomach acid is especially caustic, and could do serious damage to her lungs. Aspirating alone can be cause for atelectasis (lung collapse) or pneumonia. Her numbers were good, and though she was quiet (these instances are always very draining for her), she made it through the full treatment without panicking or having her oxygen drop.<br />
<br />
I was shot. Toward the end of suctioning her - I think it was after I heard her make noise - my hands started to tingle. Like I had been sitting on them for hours, and they were finally getting the feeling back, except more intense. Buzzier. I don't know how to explain it. The same with my head - it started to buzz. My hands felt like they were shaking, but my mom said she didn't see them doing so. She had taken Bert out to go to the bathroom at the exact moment I gave Lucy the initial cough that started the episode, and came in just as I was starting to hear sounds from her.<br />
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I know that Lucy has it relatively easy, if you look at the spectrum of SMA. There are children who have more frequent episodes, or who crash harder. I am grateful, SO grateful, that we don't deal with more severe episodes, or deal with them on a regular basis, but that doesn't make them any less scary. Or draining, once they have passed.<br />
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I don't live life like my daughter is dying. To me, that's not an eventuality of her condition. It's not a given. But it is, like it is for all of us, a possibility. And while I was working on her, and seeing her numbers drop, I didn't know where - or if - they would stop dropping and go back up. I was doing everything in my power, and it's heartbreaking and terror inducing to think maybe this time it won't be enough. Those are just flashes of thoughts when you're in the moment, because you're focusing all of your attention on clearing your child's airway, but those flashes are there. Maybe it won't be enough. Maybe I'll suction when I should cough. God please, PLEASE guide my hands to do what they need to. Please clear her. <i>Please.</i><br />
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Lucy isn't a "bounce back immediately" type of kid when it comes to these episodes. She's quiet and somber for awhile. But this afternoon, she's seeming pretty much back to her goofy, sassy, bossy self. Thank goodness.<br />
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<span style="font-size: x-small;">After her full treatment, right before she fell asleep.</span></div>
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<span style="font-size: x-small;">After her looong nap; she loves her bipap :)</span></div>
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I don't know if she has nightmares about these episodes. I know I would. My dreams are usually too abstract and bizarre to center directly on a specific event like this, but I'm sure some of the weird happenings are related to the extreme stress that I feel from them. I just pray that any episode Lucy has teaches us, and prevents the same thing from happening twice. It's an immense blessing any time we get another chance, and we never, <i>never,</i> take them for granted.<br />
<br />
Needless to say, I'm very attached to Lucy right now. Noah is very attached to Lucy as well. This reflux is new territory for us, and something that, to me, means I need to just take an evaluation of any areas that Lucy may be changing, or weakening. We would very much appreciate your prayers for this being a one-time incident. It doesn't mean we won't still be extra careful from now on, but not having to watch Lucy go through that again would be a big blessing.<br />
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Hopefully our next update will be more upbeat! There are so many good things happening so quickly with Lucy's addition, so I don't see any way it couldn't be ;)<br />
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<br />Lucy's Mamahttp://www.blogger.com/profile/01276610711792112286noreply@blogger.com0tag:blogger.com,1999:blog-3128424260492554822.post-14235989433586492192014-07-25T05:56:00.000-07:002014-07-25T06:57:14.242-07:00A Whole Hand! Lucy's 5th Birthday Party!After the Dr. Seuss theme last year, I was out of themes for characters that Lucy liked. I had planned to do an ice cream party, since she loves that stuff, and then she decided to like movies other than Tarzan! My little girl is growing up! (sniff sniff) <br />
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We were settled on a Peter Pan shindig, and then two months before, Lucy changed her mind to Cinderella. Since she likes the old-school, classic Cinderella movie, but doesn't go for any of the newfangled sequels and prequels and all that jazz, I wanted to stick with decorations that were in line with those illustrations. Easy, right?<br />
<br />
WRONG. Cinderella, as she exists now, is all tarted up and flashy. Lucy very much enjoys the old Disney movies period, and I wasn't sure if she'd even reconcile the current Cinderella plastered all over the Party City plastic tablecloths with the one from the movie she's come to love, (her favorite part is the Prince's dad jumping on the bed, trying to slash his Duke, btw) so I decided to make all of her decorations. Because why not, right?<br />
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So I painted, and sewed, and papier-mache-d, and thrifted. I managed to cobble together some pieces that I felt represented the essence of the original Cinderella, which could also be used in Lucy's soon-to-be-finished downstairs room (which is moving along at the speed of light!) Brace yourself; pictures are coming.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjM4sCzW2NtiA-k9o8L6BYIyrF4Fv_uw6-QIOBarz-SptZ7oDowBZabZ3RdF3yZ_imBKJFZ0lj_AZXqFzKmhZCJehY8gSWGVNYaGCtNeOtt453JpHe8RNaJENmT26T8bO2VU73ij4X7hTqI/s1600/IMG_9190.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjM4sCzW2NtiA-k9o8L6BYIyrF4Fv_uw6-QIOBarz-SptZ7oDowBZabZ3RdF3yZ_imBKJFZ0lj_AZXqFzKmhZCJehY8gSWGVNYaGCtNeOtt453JpHe8RNaJENmT26T8bO2VU73ij4X7hTqI/s1600/IMG_9190.JPG" height="320" width="240" /></a></div>
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<span style="font-size: x-small;">The party was at Grandma and Grandpa's, </span></div>
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<span style="font-size: x-small;">so she couldn't very well ride in her princess dress. </span></div>
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<span style="font-size: x-small;">She needed a travel outfit. I obliged, using <a href="http://jenloveskev.com/2014/01/09/screen-printed-family-t-shirts-freezer-paper/" target="_blank">this</a> technique.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHmDJ48ciOKHS7urHtFJRt0UwyTm8StzK77703yXsp28OPRmaB8DWkqwBVc5bPN-R6d8CqizIqejnSiReN4PovVrh8Eo2jJ45YHzQ5enu4PK3sp9BfDNguST6Z_Ty1MYQHZNgbEEtAXRAW/s1600/IMG_9219.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHmDJ48ciOKHS7urHtFJRt0UwyTm8StzK77703yXsp28OPRmaB8DWkqwBVc5bPN-R6d8CqizIqejnSiReN4PovVrh8Eo2jJ45YHzQ5enu4PK3sp9BfDNguST6Z_Ty1MYQHZNgbEEtAXRAW/s1600/IMG_9219.JPG" height="320" width="240" /></a></div>
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<span style="font-size: x-small;">Then she changed when we got there! I bought the </span></div>
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<span style="font-size: x-small;">Cinderella dress in the toy section at Target, and because</span></div>
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<span style="font-size: x-small;">I don't like to do things the easy way, I used leftover rhinestones</span></div>
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<span style="font-size: x-small;">from the hair clip I made to embellish the dress.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFJPx1whRbXiRJA0y5ewV2Oop2fJ-DVG69ARxVqIppfXDey_l6pi3oVvfFHJTAiScChRvisEIDrc9L7Tq35YKf73YWJRLPm8uyhQG5B6u2KDhxITuGjvBF9ONoXu7PoK53fJgaxAgoF2Cz/s1600/IMG_1158.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFJPx1whRbXiRJA0y5ewV2Oop2fJ-DVG69ARxVqIppfXDey_l6pi3oVvfFHJTAiScChRvisEIDrc9L7Tq35YKf73YWJRLPm8uyhQG5B6u2KDhxITuGjvBF9ONoXu7PoK53fJgaxAgoF2Cz/s1600/IMG_1158.jpg" height="240" width="320" /></a></div>
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<span style="font-size: x-small;">See? Plain sequins, and then sequins with glass beads.</span></div>
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<span style="font-size: x-small;">And because I liked the leftovers on the top so much, I went</span></div>
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<span style="font-size: x-small;">and bought the rest of the beads at half off and finished </span></div>
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<span style="font-size: x-small;">off the whole bodice! Bling bling!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoFS3d6dCxM76CBEJCCkzgzplrtqGUW6GKr0TT810LBR0FvPHKf1J6y-sAqgvfjphm5uz6aR-GbdUssBP0UM5pSKuRxF76FsmmRU9WMZIglG2upsIooCHU93mJKU_UXZ4ZYkJ3pzDVlNYj/s1600/DSC_0523.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoFS3d6dCxM76CBEJCCkzgzplrtqGUW6GKr0TT810LBR0FvPHKf1J6y-sAqgvfjphm5uz6aR-GbdUssBP0UM5pSKuRxF76FsmmRU9WMZIglG2upsIooCHU93mJKU_UXZ4ZYkJ3pzDVlNYj/s1600/DSC_0523.JPG" height="212" width="320" /></a></div>
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<span style="font-size: x-small;">What's Cinderella without her carriage? And a fairy godmother?</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhw6N7q9i3J37Aq1iQ5B5nlfPcU_rwFtqNMfwBaOYGClwDz9FMssfPcJsSVCLML1t6irWY87kJAibB8BQsVCsyfJRBfq2kAXH3MPg8i-e0ayuIb6iN9xM1X2H4vvsh39UnYAHDIF6omnxia/s1600/DSC_0529.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhw6N7q9i3J37Aq1iQ5B5nlfPcU_rwFtqNMfwBaOYGClwDz9FMssfPcJsSVCLML1t6irWY87kJAibB8BQsVCsyfJRBfq2kAXH3MPg8i-e0ayuIb6iN9xM1X2H4vvsh39UnYAHDIF6omnxia/s1600/DSC_0529.JPG" height="212" width="320" /></a></div>
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<span style="font-size: x-small;">You think she liked it?</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWIS23rcm1C_0dvJkwHy0c6NdzJpPbRmsoD7ui6S876onRbENh6pOVVuYYaZfKQSikhJNlIZDE7clruXgKH7LqaDfOIDrTRZgUWoB29BxxL3HcmvnUDPgQpF3UxtSnTARIeYbOb2oH4UCH/s1600/DSC_0549.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWIS23rcm1C_0dvJkwHy0c6NdzJpPbRmsoD7ui6S876onRbENh6pOVVuYYaZfKQSikhJNlIZDE7clruXgKH7LqaDfOIDrTRZgUWoB29BxxL3HcmvnUDPgQpF3UxtSnTARIeYbOb2oH4UCH/s1600/DSC_0549.JPG" height="212" width="320" /></a></div>
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<span style="font-size: x-small;">Yeah, I think she liked it.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyE_LA3V0H64aASagDHwkm-FMgS6qvWmIIZRs_QjF0KohkfeHlYgMI87TOQirSHcmAxHxxOy5SAahQ8YNwdD71fgl-s_YNpIa9g0ajBh9bZKeRkOYJEizMRe4zaI0exF4PCfI_Ju4h1f_U/s1600/DSC_0554.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyE_LA3V0H64aASagDHwkm-FMgS6qvWmIIZRs_QjF0KohkfeHlYgMI87TOQirSHcmAxHxxOy5SAahQ8YNwdD71fgl-s_YNpIa9g0ajBh9bZKeRkOYJEizMRe4zaI0exF4PCfI_Ju4h1f_U/s1600/DSC_0554.JPG" height="212" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiG4dEUyqbAcgWFn2grh0O7ZgqaFVybRyCvnQpkH7XeN4sDLqdjV3_qeeGSRODpsK6ob_ezYy4OzFMD2fVeC9An6l47QqkT8NSzAA5uEkP3uCJapZKOlkT5Kv0txbWM5uK4GtqoWurVXkVO/s1600/DSC_0552.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiG4dEUyqbAcgWFn2grh0O7ZgqaFVybRyCvnQpkH7XeN4sDLqdjV3_qeeGSRODpsK6ob_ezYy4OzFMD2fVeC9An6l47QqkT8NSzAA5uEkP3uCJapZKOlkT5Kv0txbWM5uK4GtqoWurVXkVO/s1600/DSC_0552.JPG" height="212" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWCRmkcKPLUkUPVozyFUE67zGCK_qzYFUfYtmzvxaRKfAqYUNkm2hHyKwuPg-8l0c8PkumZO3HCU5Zimx348x5RZzSQn3JKQCuofe4mghmFwW1ODrzguhy3aiaLGBN2rlaDB6Zq6TVFYC1/s1600/DSC_0556.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWCRmkcKPLUkUPVozyFUE67zGCK_qzYFUfYtmzvxaRKfAqYUNkm2hHyKwuPg-8l0c8PkumZO3HCU5Zimx348x5RZzSQn3JKQCuofe4mghmFwW1ODrzguhy3aiaLGBN2rlaDB6Zq6TVFYC1/s1600/DSC_0556.JPG" height="212" width="320" /></a></div>
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<span style="font-size: x-small;">We also picked up a matching purse and wand at Target.</span></div>
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<span style="font-size: x-small;">The wand flipped open with the press of a button.</span></div>
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<span style="font-size: x-small;">She dug it.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieZv_p743MQ_dEI35KXluZKmICYOl3liW-NLA8uv1ZQwy1QqNmOcILQ2JmPWqP4LfhcZiQHoyCvf5WvSHdsMLQlJi-sdJ1V8INoVCaa_BVilbkT6cOm5PLK8sKerwC-NRD9WxyQ_FicZux/s1600/DSC_0565.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieZv_p743MQ_dEI35KXluZKmICYOl3liW-NLA8uv1ZQwy1QqNmOcILQ2JmPWqP4LfhcZiQHoyCvf5WvSHdsMLQlJi-sdJ1V8INoVCaa_BVilbkT6cOm5PLK8sKerwC-NRD9WxyQ_FicZux/s1600/DSC_0565.JPG" height="212" width="320" /></a></div>
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<span style="font-size: x-small;">She also dug the silvery beads that I hung on the chandelier.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwRJxwHTnJuCU9zZdWmKJYVYxpx4J37hQxOxy-I9FG9HqYNMi-PFwUPE9-z2klR5OK4_UjfY47nq16IRsoywkq2ohqC2CzAQNNSBD7eXPGe-xUK721YWLs4VNMkiye_zLbLlTJ-cXe9G9J/s1600/DSC_0569.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwRJxwHTnJuCU9zZdWmKJYVYxpx4J37hQxOxy-I9FG9HqYNMi-PFwUPE9-z2klR5OK4_UjfY47nq16IRsoywkq2ohqC2CzAQNNSBD7eXPGe-xUK721YWLs4VNMkiye_zLbLlTJ-cXe9G9J/s1600/DSC_0569.JPG" height="320" width="212" /></a></div>
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<span style="font-size: x-small;">Shimmery, crystal-y beads.</span></div>
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BEADS. <span style="font-size: x-small;">And I get to reuse these for Christmas. Thanks St. Vinny's!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvtwDHOfNsxA_DX6JPqnO-BxHvajl2cLcL0NkX1dPaoqRIEnjLqrUUXe7Skf5mDfG3w82iAfVb2I_yCr7sJKCDmvNYnwlzy6J1zaF7BWtyitXWuCSMitekq_-luZUN7gIXD_AHSBg4LqlN/s1600/DSC_0598.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvtwDHOfNsxA_DX6JPqnO-BxHvajl2cLcL0NkX1dPaoqRIEnjLqrUUXe7Skf5mDfG3w82iAfVb2I_yCr7sJKCDmvNYnwlzy6J1zaF7BWtyitXWuCSMitekq_-luZUN7gIXD_AHSBg4LqlN/s1600/DSC_0598.JPG" height="320" width="212" /></a></div>
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<span style="font-size: x-small;">And there was this. A nice big canvas, that I had in our attic, was</span></div>
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<span style="font-size: x-small;">turned into Cinderella's view of the castle from her window, as</span></div>
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<span style="font-size: x-small;">depicted in the movie (or as best rendered from the blurry screen</span></div>
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<span style="font-size: x-small;">shots I managed to find online.) It took me a few sessions. I'm more of</span></div>
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<span style="font-size: x-small;">an abstract, throw-paint-at-the-canvas type of painter, mostly because I'm </span></div>
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<span style="font-size: x-small;">never satisfied with outcomes when I try to duplicate an already existing image.</span></div>
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<span style="font-size: x-small;">Overall, I'm okay with this - plus, artwork for Lucy's room! Two birds, people!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHpPZuBDNgnJfxS9RbZzAaI1mlIaqlgDCAuLHbhQkPSFcdq9EfAGTEBYq_NHfGJezfdqJMJYtXUdlikmmMobSejCwSDRijSKbnJDBgsyflgp2AwSVgWb3sRd_7EXI3c5u18LCDEvKapwYk/s1600/DSC_0580.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHpPZuBDNgnJfxS9RbZzAaI1mlIaqlgDCAuLHbhQkPSFcdq9EfAGTEBYq_NHfGJezfdqJMJYtXUdlikmmMobSejCwSDRijSKbnJDBgsyflgp2AwSVgWb3sRd_7EXI3c5u18LCDEvKapwYk/s1600/DSC_0580.JPG" height="320" width="212" /></a></div>
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<span style="font-size: x-small;">I always loved the scene where the birds and mice</span></div>
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<span style="font-size: x-small;">are making Cinderella's dress, (hey, wildlife, I could use a </span></div>
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<span style="font-size: x-small;">hand with *my* sewing, but whatever) and I saw a version of</span></div>
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<span style="font-size: x-small;">it that was based on a pattern I know well, so I added a little</span></div>
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<span style="font-size: x-small;">of my own flair :)</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLF84RjjBH_hfn8pInAYb85UKrD-cgxtp11EesMX-DgvjBA697V61OlKo2tzVAOvYnAgBYPbwwUEZtIJ3fRw5_rR8fy6Q1T11KaN6fRR7ihbCqpA8pTcJ21glp833cNEUIJ_zpMQMnb3Dn/s1600/DSC_0585.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLF84RjjBH_hfn8pInAYb85UKrD-cgxtp11EesMX-DgvjBA697V61OlKo2tzVAOvYnAgBYPbwwUEZtIJ3fRw5_rR8fy6Q1T11KaN6fRR7ihbCqpA8pTcJ21glp833cNEUIJ_zpMQMnb3Dn/s1600/DSC_0585.JPG" height="320" width="212" /></a></div>
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<span style="font-size: x-small;">Yep, I just draped the string of beads over my</span></div>
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<span style="font-size: x-small;">"dress form." La-zy. The dress form is a hanger wrapped</span></div>
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<span style="font-size: x-small;">in leftover poly quilt batting, and then black fabric, glued</span></div>
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<span style="font-size: x-small;">to a broomstick. Thanks to Grandpa for drilling out the </span></div>
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<span style="font-size: x-small;">round base, and Grandma for the hanger idea!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh16HSwtJck7UJTiHQ_T3ld2ywPhHZkv0zAHJ9H7o7uPwfqNObET3gTlBF7plqcRo8hrZonC_pUBf8NXbVYISOMArpPhtaHp-W-0AAFf7345yMHALG9x2ei8gn74dvzQDGVxxcvTKAJCw1o/s1600/DSC_0583.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh16HSwtJck7UJTiHQ_T3ld2ywPhHZkv0zAHJ9H7o7uPwfqNObET3gTlBF7plqcRo8hrZonC_pUBf8NXbVYISOMArpPhtaHp-W-0AAFf7345yMHALG9x2ei8gn74dvzQDGVxxcvTKAJCw1o/s1600/DSC_0583.JPG" height="212" width="320" /></a></div>
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<span style="font-size: x-small;">You can't make a dress without a dress pattern ;) I got a book from</span></div>
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<span style="font-size: x-small;">my beloved thrift store, St. Vinny's, painted the edges gold and sprinkled</span></div>
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<span style="font-size: x-small;">them with gold glitter. Then I traced these original images from the movie stills</span></div>
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<span style="font-size: x-small;">online onto some pearlized scrapbooking paper, colored them with Lucy's crayons, </span></div>
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<span style="font-size: x-small;">and slapped those babies in </span><span style="font-size: x-small;">the book with a little hot glue! </span></div>
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<span style="font-size: x-small;">Thread spools and basket also from St. Vinny's. Love that place! </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAdhbRXc9VAHr5R8rvQ4hbkwLYknT8NDHV70dNp3SDxmNT7LjPOBlYAhUcVmygM5kq8N8-iDzssMnOsuVaFrJzZRl4Jd5sCZhpCFsVxRO57SMSS9WsyUeB9qEW55BB2puLqnr-KvRONv7P/s1600/DSC_0588.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAdhbRXc9VAHr5R8rvQ4hbkwLYknT8NDHV70dNp3SDxmNT7LjPOBlYAhUcVmygM5kq8N8-iDzssMnOsuVaFrJzZRl4Jd5sCZhpCFsVxRO57SMSS9WsyUeB9qEW55BB2puLqnr-KvRONv7P/s1600/DSC_0588.JPG" height="212" width="320" /></a></div>
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<span style="font-size: x-small;">It's made in Lucy's size, so she can wear it now :)</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoL_QuDBMVXOwuuS_TOYE9RfkZaw_f8N-eSCDF3aXeHyZ-eb_adfCHBswyKQzvF25qrKNTLHCU1HpL30OrLBqcpHrSwuuS5nneChpNCqngk8phg1BscH3qhtcS7OwZsAIUTQODoX01Qx0M/s1600/DSC_0601.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoL_QuDBMVXOwuuS_TOYE9RfkZaw_f8N-eSCDF3aXeHyZ-eb_adfCHBswyKQzvF25qrKNTLHCU1HpL30OrLBqcpHrSwuuS5nneChpNCqngk8phg1BscH3qhtcS7OwZsAIUTQODoX01Qx0M/s1600/DSC_0601.JPG" height="212" width="320" /></a></div>
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<span style="font-size: x-small;">I am obsessed with book banners! It took months of scouring good ole' SV</span></div>
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<span style="font-size: x-small;">to come up with two of the same vintage Cinderella books - the ones that sell for $5+shipping each</span></div>
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<span style="font-size: x-small;">on eBay, I got for $1.25 - for both! I used a bowl to trace the rounded bottoms. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFiMgjWhs_bMXeY6vux65eJh2uR21y9EqGLU2JLbhEO3nG5eEsYmAj18hZIagUMtLwobsuF1USrVHzwEUO7xZUpRhKLaX1c_uhx16dTeMQqaKATjuJipddZzzZqzxJIA_46nIHnDIf2c8L/s1600/DSC_0606.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFiMgjWhs_bMXeY6vux65eJh2uR21y9EqGLU2JLbhEO3nG5eEsYmAj18hZIagUMtLwobsuF1USrVHzwEUO7xZUpRhKLaX1c_uhx16dTeMQqaKATjuJipddZzzZqzxJIA_46nIHnDIf2c8L/s1600/DSC_0606.JPG" height="212" width="320" /></a></div>
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<span style="font-size: x-small;">Originally, I planned to use all pages, but that banner ended up being</span></div>
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<span style="font-size: x-small;">22' long, so I went with the prettiest illustrations, that captured the </span></div>
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<span style="font-size: x-small;">general storyline. Clipped them to decorative rope with mini</span></div>
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<span style="font-size: x-small;">clothespins, easy-peasy!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYkDbc7YhI_KqGjeq4-TyISypO928HKvd0twjN32zNGerBmyDPc4uqrjw8R61Jk6smWEQbXxCOyPVXbwW8dL8IcsQBH-mEXRs8DjApkdvgXDV0XsrM-G2-Ii-4JhpGLdgyKstsHG19l1WS/s1600/DSC_0610.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYkDbc7YhI_KqGjeq4-TyISypO928HKvd0twjN32zNGerBmyDPc4uqrjw8R61Jk6smWEQbXxCOyPVXbwW8dL8IcsQBH-mEXRs8DjApkdvgXDV0XsrM-G2-Ii-4JhpGLdgyKstsHG19l1WS/s1600/DSC_0610.JPG" height="212" width="320" /></a></div>
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<span style="font-size: x-small;">Lucy's Aunt Mary knows how to get all the good shots ;)</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiELwrOLtivbZnbw2SLRE7dA0eSUPxXu-3vqwrkGQgpPjAHCBHQ2okGc0XFPKFacVddRUTpIsblJFEWnE54QJGHyhA_e_WaIasN9IMI9QtZGraOLKo-IJ7LoXEQ7VQHFDR8GNbTLvrBx4tB/s1600/IMG_9246.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiELwrOLtivbZnbw2SLRE7dA0eSUPxXu-3vqwrkGQgpPjAHCBHQ2okGc0XFPKFacVddRUTpIsblJFEWnE54QJGHyhA_e_WaIasN9IMI9QtZGraOLKo-IJ7LoXEQ7VQHFDR8GNbTLvrBx4tB/s1600/IMG_9246.JPG" height="320" width="240" /></a></div>
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<span style="font-size: x-small;">Cinderella wouldn't have gotten anywhere without her </span></div>
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<span style="font-size: x-small;">pumpkin. This is where the papier-mache came in. This pumpkin</span></div>
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<span style="font-size: x-small;">came to me as a jack-o-lantern, so I stuffed newspaper in his</span></div>
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<span style="font-size: x-small;">toothy grin and papier-mache-d over it, and then spray painted the whole</span></div>
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<span style="font-size: x-small;">shebang silver. A little gold glitter on the top, and voila! Candleholders</span></div>
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<span style="font-size: x-small;">were from our wedding, with a couple Hobby Lobby deep discount </span></div>
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<span style="font-size: x-small;">items added </span><span style="font-size: x-small;">(can't beat 90% off!), </span><span style="font-size: x-small;">and the nice fat one that's holding </span></div>
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<span style="font-size: x-small;">the pumpkin is a thrift store find.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1ktJ93Zwsy8Y5-NCLpYOtO3rUl8RzQ6ZDjy2VL9iusuQvte1PNeJbWkq3QPnWYwL0TggIMMm2f53rYTJfzOKnjemuVzv81JsnWVN0P9QbQz_98n51ycjKutPYzTfrOrvjt1iCy-RDkt3V/s1600/IMG_9248.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1ktJ93Zwsy8Y5-NCLpYOtO3rUl8RzQ6ZDjy2VL9iusuQvte1PNeJbWkq3QPnWYwL0TggIMMm2f53rYTJfzOKnjemuVzv81JsnWVN0P9QbQz_98n51ycjKutPYzTfrOrvjt1iCy-RDkt3V/s1600/IMG_9248.JPG" height="239" width="320" /></a></div>
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<span style="font-size: x-small;">And the buffet was sprinkled with tiny acrylic diamonds, from the</span></div>
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<span style="font-size: x-small;">lovely Christmas section at Hobby Lobby. I'm not sure what </span></div>
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<span style="font-size: x-small;">diamonds have to do with Cinderella, but SPARKLE!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPLF3ObdB1bn3dcTuY3TI8ZMVWm8ir0HEug9kR7NFwGs1n_yl6-KzCQEO3SACHd1iBqRb8HpoSWlh7GGMcqcsjiOJcQEvs7KDWuXwLGy4Z3qX0tgzLp-3oDnRdp7ZP2KncS3GrItCmJfxI/s1600/DSC_0616.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPLF3ObdB1bn3dcTuY3TI8ZMVWm8ir0HEug9kR7NFwGs1n_yl6-KzCQEO3SACHd1iBqRb8HpoSWlh7GGMcqcsjiOJcQEvs7KDWuXwLGy4Z3qX0tgzLp-3oDnRdp7ZP2KncS3GrItCmJfxI/s1600/DSC_0616.JPG" height="212" width="320" /></a></div>
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<span style="font-size: x-small;">What's a party without balloons?</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQgKecetGfW_T3o8TN2SbElXrj_tfXQGSrBJgDE91-8HE9iWaaez1sW72zgNxocfUsvQTNp9IFGuvYixrFCzWDpT96NvQWfsD4OgLSYJtxiK9elLrbZ-jXSh9UuckrjKVDp_I3AcH7DCM3/s1600/DSC_0620.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQgKecetGfW_T3o8TN2SbElXrj_tfXQGSrBJgDE91-8HE9iWaaez1sW72zgNxocfUsvQTNp9IFGuvYixrFCzWDpT96NvQWfsD4OgLSYJtxiK9elLrbZ-jXSh9UuckrjKVDp_I3AcH7DCM3/s1600/DSC_0620.JPG" height="212" width="320" /></a></div>
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<span style="font-size: x-small;">And beads on the chandelier?</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQG6R5T18XfvhwKy4ozZXE0f6S-d0lqxHuojQfbfNmWA0JYJSqcVmL4Ru9SNnQN71awnkKYcl9SvknA9U0HxuR2le1QHJjSuZXz_rUxaiz-qjF1HkoIBzQPI2b_WBIh7nGQOZN_xYr9Y4x/s1600/DSC_0627.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQG6R5T18XfvhwKy4ozZXE0f6S-d0lqxHuojQfbfNmWA0JYJSqcVmL4Ru9SNnQN71awnkKYcl9SvknA9U0HxuR2le1QHJjSuZXz_rUxaiz-qjF1HkoIBzQPI2b_WBIh7nGQOZN_xYr9Y4x/s1600/DSC_0627.JPG" height="212" width="320" /></a></div>
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<span style="font-size: x-small;">Beads?</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLRjpkzavNdCbleWFwbI8pqK9LwxRzufLMluqlngRb7de5LV93UaX81OMuO-_H0iGn7z3YbcPr_LzUMvyHd9TPZJ7Ar_mBnFU2MnquWN78qHB6d3hl5HLbqbvAY7t1cH1yuYEM_4RuILIX/s1600/DSC_0624.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLRjpkzavNdCbleWFwbI8pqK9LwxRzufLMluqlngRb7de5LV93UaX81OMuO-_H0iGn7z3YbcPr_LzUMvyHd9TPZJ7Ar_mBnFU2MnquWN78qHB6d3hl5HLbqbvAY7t1cH1yuYEM_4RuILIX/s1600/DSC_0624.JPG" height="212" width="320" /></a></div>
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BEADS.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHLP350vOAIVvb_fby09Hw7-U22dIUKbCriVRx3h9wKcbfGd7CQHJVjpgqBClieYiR9VpNxBCeQYK5t5mhAbN3m52NRh0-X0IMykWUYqkqqlTj2_z9kra_g8G9qHK1X0S0d6wSdCHHfkux/s1600/DSC_0630.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHLP350vOAIVvb_fby09Hw7-U22dIUKbCriVRx3h9wKcbfGd7CQHJVjpgqBClieYiR9VpNxBCeQYK5t5mhAbN3m52NRh0-X0IMykWUYqkqqlTj2_z9kra_g8G9qHK1X0S0d6wSdCHHfkux/s1600/DSC_0630.JPG" height="212" width="320" /></a></div>
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Take a breather, Lucy. Focus. On something beside the beads.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgT1mmNgmBFmGUQi5kLVqBz9v00p8sdGFr2Dn9kAvU1t0itP1DBeQDLUKge3rEBpAqHM6GPo72nBhZbG-F_rlGwVnfBlmyANsXtH3qkZVqWbT4WtsvFxM1mxa3uOOsISaTgzLOWvBlOG2sN/s1600/DSC_0636.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgT1mmNgmBFmGUQi5kLVqBz9v00p8sdGFr2Dn9kAvU1t0itP1DBeQDLUKge3rEBpAqHM6GPo72nBhZbG-F_rlGwVnfBlmyANsXtH3qkZVqWbT4WtsvFxM1mxa3uOOsISaTgzLOWvBlOG2sN/s1600/DSC_0636.JPG" height="320" width="212" /></a></div>
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<span style="font-size: x-small;">Like this! Your glass slipper cake, made by the creative genius</span></div>
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<span style="font-size: x-small;">that brought us your Lorax cake last year, the wonderful <a href="https://www.facebook.com/pages/Joshs-Cakes/339694329455921" target="_blank">Josh's Cakes</a>!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg12SR-kGLwwoq4Q4_9FgZAS7AKkP09HdjKOW0MATveuVeJNutxRDvFs32zK41etxwJTSy94q-PvhmwkbdqpwNj0AgPUspN2u7yRRmPLNqeukJvGiQpMD0t5TAD88FqEr7pQehQ95EiQ_tI/s1600/DSC_0639.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg12SR-kGLwwoq4Q4_9FgZAS7AKkP09HdjKOW0MATveuVeJNutxRDvFs32zK41etxwJTSy94q-PvhmwkbdqpwNj0AgPUspN2u7yRRmPLNqeukJvGiQpMD0t5TAD88FqEr7pQehQ95EiQ_tI/s1600/DSC_0639.JPG" height="212" width="320" /></a></div>
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<span style="font-size: x-small;">Oh, that's pretty!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKhuUTvfAtEro786bGlYbmk5l1FO31TYyUCYmOzizffBKC2KcoMMZEYaLskNwm0Dr-x_BoukYZZmUQZgQ9PPZYa6rMOJNP-zg3UXe1u1y6GsPP51C-roC3R7GB8gL3hvyjFJI4UJAzQ_u9/s1600/DSC_0643.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKhuUTvfAtEro786bGlYbmk5l1FO31TYyUCYmOzizffBKC2KcoMMZEYaLskNwm0Dr-x_BoukYZZmUQZgQ9PPZYa6rMOJNP-zg3UXe1u1y6GsPP51C-roC3R7GB8gL3hvyjFJI4UJAzQ_u9/s1600/DSC_0643.JPG" height="212" width="320" /></a></div>
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BUT BEADS.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVgviIqlyfRFRrIEIlVOIK2scK9R12iVIIw1XIBVFYoVxAYnRiMuX9kZOtFZAqp3QfNMjVpfMbSfjrp6xtHsb1csfSOxqtwtpF4GtgHk8Qm2e-FDjfLIsxkBBQ04XLTheemZxGdILkbGrb/s1600/DSC_0648.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVgviIqlyfRFRrIEIlVOIK2scK9R12iVIIw1XIBVFYoVxAYnRiMuX9kZOtFZAqp3QfNMjVpfMbSfjrp6xtHsb1csfSOxqtwtpF4GtgHk8Qm2e-FDjfLIsxkBBQ04XLTheemZxGdILkbGrb/s1600/DSC_0648.JPG" height="212" width="320" /></a></div>
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<span style="font-size: x-small;">Adding the candles, while Prince Charming (aka Mateo)</span></div>
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<span style="font-size: x-small;">looks on.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJjv3ig3Sdf_RPhwtb-8f0Z-0A361a6nQoZfTE8LyB813s1PHXVkPS7Ugg5p6wF9_YW75lUY2S-WZqQXA_exccFGt-rK_WtmgBTt4_khyt-Et72Xr1R0aDan2vp-We6eFDoQX857pPmpXz/s1600/DSC_0653.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJjv3ig3Sdf_RPhwtb-8f0Z-0A361a6nQoZfTE8LyB813s1PHXVkPS7Ugg5p6wF9_YW75lUY2S-WZqQXA_exccFGt-rK_WtmgBTt4_khyt-Et72Xr1R0aDan2vp-We6eFDoQX857pPmpXz/s1600/DSC_0653.JPG" height="212" width="320" /></a></div>
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<span style="font-size: x-small;">Ooh, fire! Love me some fire!</span></div>
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<span style="font-size: x-small;">Still, beads...</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtzfgt8uUMkP-PaEr7zKcxe0TWzympP9rwYH7WaFFtJGM8VU1P5hyphenhyphenX8XyQ5C-BQmd9dqrBk6PNLSzFDHo6EBiItsPZCcybTsWnVfRFFCvvXoNNR2VU1jpYC_ZN6GWK4itt6kDQ5rf0HF9I/s1600/DSC_0658.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtzfgt8uUMkP-PaEr7zKcxe0TWzympP9rwYH7WaFFtJGM8VU1P5hyphenhyphenX8XyQ5C-BQmd9dqrBk6PNLSzFDHo6EBiItsPZCcybTsWnVfRFFCvvXoNNR2VU1jpYC_ZN6GWK4itt6kDQ5rf0HF9I/s1600/DSC_0658.JPG" height="212" width="320" /></a></div>
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<span style="font-size: x-small;">Oh, but they're singing happy birthday! To me!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDNMiKG5RGZXQRUw-zo-XDPQCsBRMIcOrKRLOSsBvPuGPZqkAnTSco1mXMZQBMgl8QRhDzi10uhfA9MlfTRrU8FJ9dyUxDRLlXH0KQ6I0qwzGmoRpci2wJVshW7ohvLM_vW2hvwcSQ6zqY/s1600/DSC_0663.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDNMiKG5RGZXQRUw-zo-XDPQCsBRMIcOrKRLOSsBvPuGPZqkAnTSco1mXMZQBMgl8QRhDzi10uhfA9MlfTRrU8FJ9dyUxDRLlXH0KQ6I0qwzGmoRpci2wJVshW7ohvLM_vW2hvwcSQ6zqY/s1600/DSC_0663.JPG" height="212" width="320" /></a></div>
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<span style="font-size: x-small;">And she had to clap for the singers :)</span></div>
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She got a little goofy while we were cutting the cake :) <a href="https://www.youtube.com/watch?v=lPL7ldPk8-c" target="_blank">Kind of giggly, kind of eyeroll-y</a>. She can't eat her cake, but we let her have a little taste of the blueberry filling. Watch the video in the link above! And speaking of blueberry filling...</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh10mXW94H627XJ62R4G-195a6ZSWvVXK-QJ0tzCEHKiuT8W9ay0_fLf6_gHipG2zlIjCCRbhGusJKy7w8ch6geU3JeJldagWQn8JNLkHm6JovyR3HeqFz6Ho0kuKZrRiyj53uQs9UifVeI/s1600/DSC_0798.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh10mXW94H627XJ62R4G-195a6ZSWvVXK-QJ0tzCEHKiuT8W9ay0_fLf6_gHipG2zlIjCCRbhGusJKy7w8ch6geU3JeJldagWQn8JNLkHm6JovyR3HeqFz6Ho0kuKZrRiyj53uQs9UifVeI/s1600/DSC_0798.JPG" height="212" width="320" /></a></div>
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<span style="font-size: x-small;">Lucy's glass slipper cake was white cake, vanilla cheesecake, and blueberry filling.</span></div>
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<span style="font-size: x-small;">That's right. Cake. Cheesecake.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3iTg_C_qO2AEgb4iykovXtxEAVAHfaCda_8gXQFrUyaLNIOKDh5j9sMVQ4wwTuCyz5fYnCJzDXmYzdfjxF9a__LHhu_EiKfDZUEfNo21RkonQOKijZdZEyhu5wjUSicnjaY0ofjIf-b9-/s1600/DSC_0801.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3iTg_C_qO2AEgb4iykovXtxEAVAHfaCda_8gXQFrUyaLNIOKDh5j9sMVQ4wwTuCyz5fYnCJzDXmYzdfjxF9a__LHhu_EiKfDZUEfNo21RkonQOKijZdZEyhu5wjUSicnjaY0ofjIf-b9-/s1600/DSC_0801.JPG" height="212" width="320" /></a></div>
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AND BLUEBERRY FILLING.</div>
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<span style="font-size: x-small;">With a divine buttercream frosting under the fondant.</span></div>
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<span style="font-size: x-small;">It was spectacular.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihXUWrcasfvb-QNqdgNf34D14YS4NNBFql3xTCnz34We4bn4BZ2diWlao4VvtFD0y6WqgS4PoqX2t0M7SXrhihl8fEBFYOxdUgSqvkr3JMVKwk10r1oSBWIhGgHsG0kNK1zMEu6cXihWdh/s1600/DSC_0806.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihXUWrcasfvb-QNqdgNf34D14YS4NNBFql3xTCnz34We4bn4BZ2diWlao4VvtFD0y6WqgS4PoqX2t0M7SXrhihl8fEBFYOxdUgSqvkr3JMVKwk10r1oSBWIhGgHsG0kNK1zMEu6cXihWdh/s1600/DSC_0806.JPG" height="212" width="320" /></a></div>
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<span style="font-size: x-small;">And look at that detail! The quilting! The gold tassels cleverly</span></div>
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<span style="font-size: x-small;">fashioned from licorice! Fondant buttons! The perfect perch for</span></div>
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<span style="font-size: x-small;">Lucy's glass slipper. Thanks again, Josh!</span></div>
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After that crazy delicious cake, Lucy got to open her presents!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjR5lFGpu5Cc43wRvvd1uhz92unY4OiXXCT1Vodf2givvWDBZkF2VlAg5o4dLTRt9yxv6qga6XzLUjOXZ0CH1gFX-805HbVktcRcH_tGfCavuRLt57ssCQtjxa5TUiW_8zp-duVXkETNjp9/s1600/DSC_0751.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjR5lFGpu5Cc43wRvvd1uhz92unY4OiXXCT1Vodf2givvWDBZkF2VlAg5o4dLTRt9yxv6qga6XzLUjOXZ0CH1gFX-805HbVktcRcH_tGfCavuRLt57ssCQtjxa5TUiW_8zp-duVXkETNjp9/s1600/DSC_0751.JPG" height="212" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjobXNUyFmDgeokpGUqfpokKbCBuOKuyw4GVVcvjTBqBx3pzPNXWGmzAygwYxPm3hm6_r8v2vAP3sZFiTE_qlHor8S5JpI1Qv3DwvXXVU3RlKSRKFNdNHb3tPXMATULJAL2aQbUrlRGBdBy/s1600/DSC_0761.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjobXNUyFmDgeokpGUqfpokKbCBuOKuyw4GVVcvjTBqBx3pzPNXWGmzAygwYxPm3hm6_r8v2vAP3sZFiTE_qlHor8S5JpI1Qv3DwvXXVU3RlKSRKFNdNHb3tPXMATULJAL2aQbUrlRGBdBy/s1600/DSC_0761.JPG" height="212" width="320" /></a></div>
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<span style="font-size: x-small;">Mateo was all "Girl party? Presents not for me? This is for</span></div>
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<span style="font-size: x-small;">the birds!" Don't worry; his was the weekend after :)</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPGVS7ahPCkVOJg42OxAAITA-1WqgTtO_Ap-7ki5jvP9MoXF2NRP7BDlefAcKLNDofA6-3cg5GTiVR2e5HlIQ_YukOtccSY1LSD_vLRRLanoQB64GFhyNB_yi2QeIx2Wq-KMAd941J3LdQ/s1600/DSC_0775.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPGVS7ahPCkVOJg42OxAAITA-1WqgTtO_Ap-7ki5jvP9MoXF2NRP7BDlefAcKLNDofA6-3cg5GTiVR2e5HlIQ_YukOtccSY1LSD_vLRRLanoQB64GFhyNB_yi2QeIx2Wq-KMAd941J3LdQ/s1600/DSC_0775.JPG" height="212" width="320" /></a></div>
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<span style="font-size: x-small;">The only female to get an ironing board for her birthday</span></div>
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<span style="font-size: x-small;">and be happy about it.</span></div>
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We also had to get some shots of the price and princess before we wrapped up the party :)</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUBUCDWiyCifmXnSRvMahSfV83VTfn0nP3FImzoqbzgcIGrcSJe024-HgosQbwJ8rZJfQqXDtsyxapCz4BEWE0vVO6OWwmxepWpQcTr4o6OTT3cUh_FD6nO2gYnbD5tbliqaKpQsW6fQdD/s1600/DSC_0788.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUBUCDWiyCifmXnSRvMahSfV83VTfn0nP3FImzoqbzgcIGrcSJe024-HgosQbwJ8rZJfQqXDtsyxapCz4BEWE0vVO6OWwmxepWpQcTr4o6OTT3cUh_FD6nO2gYnbD5tbliqaKpQsW6fQdD/s1600/DSC_0788.JPG" height="212" width="320" /></a></div>
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<span style="font-size: x-small;">Okay, you got your picture!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3gXNaKGIPmAkKW_X_xSDA54zEGww-gBpT45V2Lj_z-kq7o6iq3rwwshii7Tw5BK0FDL1_deJ7mLCfIZO8CYiE7LaNJJnZwj-Uo0JUohtyC8sVW34D5pwW5AkcoxontINj3uYHpkvMsG5j/s1600/DSC_0791.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3gXNaKGIPmAkKW_X_xSDA54zEGww-gBpT45V2Lj_z-kq7o6iq3rwwshii7Tw5BK0FDL1_deJ7mLCfIZO8CYiE7LaNJJnZwj-Uo0JUohtyC8sVW34D5pwW5AkcoxontINj3uYHpkvMsG5j/s1600/DSC_0791.JPG" height="212" width="320" /></a></div>
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<span style="font-size: x-small;">Now it's time to check out the BEADS!</span></div>
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Seriously. She spent a good portion of that party admiring the silvery beads on the chandelier. She has glitter in her veins - wonder who she got that from? ;) I wanted to get a pretty light fixture like that for her room, but now I'm rethinking it; I'm pretty sure gazing at it would end up being the only thing she'd want to do!</div>
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As per usual, Lucy was up early the morning of her party, so she was pretty worn out by the time her party started. She's been needing her bipap more in these situations, when she's tired, as opposed to just "wanting" it, when she was a little younger. She's definitely changed in strength over the last year, so we're accommodating. Getting used to having her on her bipap sometimes when we're out and about, and knowing when tired is *too* tired, so we can head off any situation that might become more emergent. You can hear the relieved hoots when she gets her bipap during these worn out times. Of course, if she would go to sleep and wake up at decent times, and take her naps, we may be able to avoid some of these instances, but try convincing her of that! At any rate, we're very grateful for the machines that allow her to rest, keep her healthy, and make her happy.</div>
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Time to start planning next year's party! Maybe we'll revisit the Peter Pan idea! Or the ice cream. Who knows what she'll like by then? Whatever she chooses, I'm sure there's a Pinterest post for that ;)</div>
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<br />Lucy's Mamahttp://www.blogger.com/profile/01276610711792112286noreply@blogger.com4tag:blogger.com,1999:blog-3128424260492554822.post-49625001144901190952014-06-30T06:24:00.000-07:002014-06-30T06:24:49.896-07:00Links for Lucy and Moving Forward!Wow, it's been too long since our last post! Since it's summer, we're cramming in activities and trying to spend as much time as we can out and about - even if that just means a little trip to our favorite diner:<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimXzO5Ads_oTafQOtsPHsYUelkqvFOQ7k51brHETQYpZH2eNcyXfBcj-A9KhRdVjb9NyaL08ttgPgI_t03SfVZ4jhb90w4dqdik2kV3p28qek6yRZSc-cme03KaeoIf_kFkADxFc4sjAKT/s1600/IMG_6293.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimXzO5Ads_oTafQOtsPHsYUelkqvFOQ7k51brHETQYpZH2eNcyXfBcj-A9KhRdVjb9NyaL08ttgPgI_t03SfVZ4jhb90w4dqdik2kV3p28qek6yRZSc-cme03KaeoIf_kFkADxFc4sjAKT/s1600/IMG_6293.jpg" height="320" width="240" /></a></div>
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Or a stop at the park to check out the fountain...</div>
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...and see the goats :)</div>
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We're also excited that Music in the Park has started!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkRYBEC7TeVYDxJe6xd6G5QXIZlZrtWChCo8dMYw7jqD74DqGHKpmSoMcrMZGwb42C9JtafULkFyLJpCpj6WqZKZ_WLJttuFrWV-Mb87LQppyqd1xSTqVs2dfxxCs6WRBXgs8szi6LrVX0/s1600/IMG_5499.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkRYBEC7TeVYDxJe6xd6G5QXIZlZrtWChCo8dMYw7jqD74DqGHKpmSoMcrMZGwb42C9JtafULkFyLJpCpj6WqZKZ_WLJttuFrWV-Mb87LQppyqd1xSTqVs2dfxxCs6WRBXgs8szi6LrVX0/s1600/IMG_5499.jpg" height="239" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ7lyH5314W2IxuRRA0Tsuxk2g5dXy077Ezm12paHZs-_K1UoC7lA9INOAX47EvA3-aS_YZsoIA0Voyi_R7Ax3HBI7L_cndQ8bO-vcSY4-DdKJCy2NKMWRxCTYMBElo-hx4J82S4w1eGkw/s1600/IMG_9619.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ7lyH5314W2IxuRRA0Tsuxk2g5dXy077Ezm12paHZs-_K1UoC7lA9INOAX47EvA3-aS_YZsoIA0Voyi_R7Ax3HBI7L_cndQ8bO-vcSY4-DdKJCy2NKMWRxCTYMBElo-hx4J82S4w1eGkw/s1600/IMG_9619.jpg" height="240" width="320" /></a></div>
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<span style="font-size: x-small;">Some songs are just too good not to dance to :)</span></div>
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And we're getting to church on Sundays, now that Lucy's sleep schedule has her more awake in the mornings :)</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMDs3nfDIbpFNHpy71wDtGydwpyxrYcD5af4FAJoyNfQWzyggHhydulSLQvMxHECqezXfg3_PkP9UaHsv27awKCCFfcrYJbVmNef_9LD0Ky7R6WwLblErxOyjjQC95hE85yoINWPzWa9et/s1600/IMG_5129.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMDs3nfDIbpFNHpy71wDtGydwpyxrYcD5af4FAJoyNfQWzyggHhydulSLQvMxHECqezXfg3_PkP9UaHsv27awKCCFfcrYJbVmNef_9LD0Ky7R6WwLblErxOyjjQC95hE85yoINWPzWa9et/s1600/IMG_5129.jpg" height="320" width="240" /></a></div>
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<span style="font-size: x-small;">Our church has a great children's sermon!</span></div>
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<span style="text-align: left;">Of course, we can't get out and do these things without Daddy, so we do some fun things at home, too. We had a baking day recently, and we read stories, and since school is out now (Lucy graduated 4K)...</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0vqbmfLP4jIZsGAb1NXZyvRht_EMNVYCnwpi2hWLhg-ysOh0F9wQ3-Pcy47x0sBq39W02lei1uzAtozufyyJnRDiL_rZrWHJlxBiibu9dgvZIRhDGdNMU9120-qdoVxTb0skSNFfQtWOL/s1600/IMG_3887.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0vqbmfLP4jIZsGAb1NXZyvRht_EMNVYCnwpi2hWLhg-ysOh0F9wQ3-Pcy47x0sBq39W02lei1uzAtozufyyJnRDiL_rZrWHJlxBiibu9dgvZIRhDGdNMU9120-qdoVxTb0skSNFfQtWOL/s1600/IMG_3887.jpg" height="320" width="240" /></a></div>
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...there is time in the afternoon to play on the iPad:<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2DKiWXciWuZ_dCnf21Fl8bAXNqTbi83DRX1QMmXEdrU_8QvBYn6eTyrHAMMDkLGs7Xmpc16hCePNVIEELdHN9eFWRnGpNLoDoGWSwiqDolXfIr3JIBXznfP9ygUjZgkEhgX0jYgH-o61U/s1600/IMG_6122.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2DKiWXciWuZ_dCnf21Fl8bAXNqTbi83DRX1QMmXEdrU_8QvBYn6eTyrHAMMDkLGs7Xmpc16hCePNVIEELdHN9eFWRnGpNLoDoGWSwiqDolXfIr3JIBXznfP9ygUjZgkEhgX0jYgH-o61U/s1600/IMG_6122.jpg" height="320" width="240" /></a></div>
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And we play family games:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgioDDYjVDhEU-a2nRTlXgrSTQNv38taRGWZ3KfPjX70-PbIXmCg8Hjh3BUv85aC4OGB4oPb7F6kFmWL-YooVbfe5hQ1lU0GlugpYAJfGDI0hYWRJpj_JEl3cYWUs5tzvwZgDH5Yze9ye0t/s1600/IMG_5160.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgioDDYjVDhEU-a2nRTlXgrSTQNv38taRGWZ3KfPjX70-PbIXmCg8Hjh3BUv85aC4OGB4oPb7F6kFmWL-YooVbfe5hQ1lU0GlugpYAJfGDI0hYWRJpj_JEl3cYWUs5tzvwZgDH5Yze9ye0t/s1600/IMG_5160.jpg" height="320" width="240" /></a></div>
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With all the activity, there always has to be time for a nap...</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghF6oKxzWO_D1zvZpmleuwZRmN3Y_848vhdkNVhUCIN7vDYaaGKtyQAxtg8SoxJqk5gFGZvNc4bn2J-Nn6-YYKB0yJ7QgNbO4x9SHBfHEaPNXqwMUOHpT6pxmRZMUrscQ-_WdzVJm-WYy1/s1600/IMG_0364.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghF6oKxzWO_D1zvZpmleuwZRmN3Y_848vhdkNVhUCIN7vDYaaGKtyQAxtg8SoxJqk5gFGZvNc4bn2J-Nn6-YYKB0yJ7QgNbO4x9SHBfHEaPNXqwMUOHpT6pxmRZMUrscQ-_WdzVJm-WYy1/s1600/IMG_0364.jpg" height="239" width="320" /></a></div>
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...or two :)</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJi-_9uW-KnV3kfmRA-vLiKzStyC3PWAFIzC8E4iInADE8pMd4qAKuITB5E50WBqrwDQ3QLriaraYj439Kf9CybGkJgK1EZeEZy4Gyr8SsYWm_dKcyqXwkukBLGlBpdW3qhiJbrwMWMVRa/s1600/IMG_8170.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJi-_9uW-KnV3kfmRA-vLiKzStyC3PWAFIzC8E4iInADE8pMd4qAKuITB5E50WBqrwDQ3QLriaraYj439Kf9CybGkJgK1EZeEZy4Gyr8SsYWm_dKcyqXwkukBLGlBpdW3qhiJbrwMWMVRa/s1600/IMG_8170.jpg" height="320" width="240" /></a></div>
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By far, though, the most exciting thing happening is Lucy's addition! It is finally underway, and that is because of the extreme generosity shown to our family by so many. The fundraisers, the donations of goods, services, time and money, and the prayers from you all have gotten us to where we are. The loan we have had to take out to fund the addition rings in at a bit over $97,000, and all-told so far, we've raised about $30,000. Some of that money went to purchase the lot next door, and the rest will be going toward construction costs.</div>
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Our most recent event, the second year of Links for Lucy, was so much fun! We had another nice day for our golfers this year, so they spent the afternoon on the course:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAia_h6ecKn5-gDaPNd-XRHJkgBwoN1bQUL7LcLyhjywhibYVOlObEJysA8tMgxAnhzuwzzhTBs83VYVpAqN_ITusOYcTg_j7DI0YXOMolMMyWCxrSz2ecH02823faVfLTSMVXiyLcE-hm/s1600/links+for+lucy+2014+001.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAia_h6ecKn5-gDaPNd-XRHJkgBwoN1bQUL7LcLyhjywhibYVOlObEJysA8tMgxAnhzuwzzhTBs83VYVpAqN_ITusOYcTg_j7DI0YXOMolMMyWCxrSz2ecH02823faVfLTSMVXiyLcE-hm/s1600/links+for+lucy+2014+001.JPG" height="239" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK9Gl4B6mHWx9aRWwiOwxhjjbCWZvn27snOpGpTuCC4OQhTlZ1tB0d50jFuBslKgEEwtrP59o4NpBL8oa3O83AkAHsijJgypBaZJRMFR19b7XyMLPtmNoQ7AqCvwV0QaFAF6OieOcUK5yY/s1600/links+for+lucy+2014+009.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK9Gl4B6mHWx9aRWwiOwxhjjbCWZvn27snOpGpTuCC4OQhTlZ1tB0d50jFuBslKgEEwtrP59o4NpBL8oa3O83AkAHsijJgypBaZJRMFR19b7XyMLPtmNoQ7AqCvwV0QaFAF6OieOcUK5yY/s1600/links+for+lucy+2014+009.JPG" height="239" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJBD_sotXW5wwmXu412kPBenFAbTDPS1ziO_A0n4JSF5mtluN0S1LqWF2ujE_IHEhwT5sNrUKoLaRgJ4ytmMHBuEBaw534YuOFytVbwvuU-3xe95xWzc5vzTkDEczjuA7tzrRMvl8NBcDM/s1600/links+for+lucy+2014+013.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJBD_sotXW5wwmXu412kPBenFAbTDPS1ziO_A0n4JSF5mtluN0S1LqWF2ujE_IHEhwT5sNrUKoLaRgJ4ytmMHBuEBaw534YuOFytVbwvuU-3xe95xWzc5vzTkDEczjuA7tzrRMvl8NBcDM/s1600/links+for+lucy+2014+013.JPG" height="239" width="320" /></a></div>
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and when they came in from the links, we had a hot dinner and raffle fun waiting for them.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH4cIXNStIEitF0NkTMzj7rGFFCwwV0UGXNoX4t33QHHzv2m1WqH-GCFQIM7BR0rICxZAconR7LpDsDJ2f0vEn78H2sEHdsYhG5meWivckyBcfTeBmks6sGVY3xqe7bhMp5a5T32ehgoDJ/s1600/links+for+lucy+2014+003.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH4cIXNStIEitF0NkTMzj7rGFFCwwV0UGXNoX4t33QHHzv2m1WqH-GCFQIM7BR0rICxZAconR7LpDsDJ2f0vEn78H2sEHdsYhG5meWivckyBcfTeBmks6sGVY3xqe7bhMp5a5T32ehgoDJ/s1600/links+for+lucy+2014+003.JPG" height="239" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyP_AOpj4O5diN5h06NcCZhbRqgCXHxi0SXtXFRR-nVI6E_GGsC0Ib8j5xSIpqFXVDEq9cEzHq3QwUaTKrCuoKS9jcQghYK1cejGi2gGIsODAUuO86zu3uFNepQHwJA70jgxiNrlYL_CG5/s1600/links+for+lucy+2014+005.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyP_AOpj4O5diN5h06NcCZhbRqgCXHxi0SXtXFRR-nVI6E_GGsC0Ib8j5xSIpqFXVDEq9cEzHq3QwUaTKrCuoKS9jcQghYK1cejGi2gGIsODAUuO86zu3uFNepQHwJA70jgxiNrlYL_CG5/s1600/links+for+lucy+2014+005.JPG" height="239" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7Zl2T2oR_jJMQ3J2oN4DLYq91bcpYO3Cb3wV_4FqV8ckgsgK9ZLQkvLRPgMxRsKsztp6cmnKG91guVRU4RbBWql_YFJ9YsCrxz2sNde_ZACBlYwcVPCwQjNwG3FikWPelyxasdrH4hXOP/s1600/links+for+lucy+2014+008.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7Zl2T2oR_jJMQ3J2oN4DLYq91bcpYO3Cb3wV_4FqV8ckgsgK9ZLQkvLRPgMxRsKsztp6cmnKG91guVRU4RbBWql_YFJ9YsCrxz2sNde_ZACBlYwcVPCwQjNwG3FikWPelyxasdrH4hXOP/s1600/links+for+lucy+2014+008.JPG" height="239" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBPABOYIlByuPPWz_f8RxnXjONkUoIYViOPEYXcyNGZjShqw2H4241iR5l_yp1SRy5NQ3-E3cUJgA-0HB-wYAoQgSTIzLuN1ovN7jR19Ev4MbueAFJjgycBeYwPvL48m7XALCHGwRSjrOA/s1600/links+for+lucy+2014+022.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBPABOYIlByuPPWz_f8RxnXjONkUoIYViOPEYXcyNGZjShqw2H4241iR5l_yp1SRy5NQ3-E3cUJgA-0HB-wYAoQgSTIzLuN1ovN7jR19Ev4MbueAFJjgycBeYwPvL48m7XALCHGwRSjrOA/s1600/links+for+lucy+2014+022.JPG" height="239" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjy2gigUdBSUlTV9Nk6YIzzyxSfrwl1F0KAYshKr1PBxoYrb9MD1RycKqqMMIrmPIyzhbK4mkN-XFKD5iF9oENBRteoQWuLiJBG69JjT7fqlKsJbNMuDart4wMEK_OHh0XAmp8E8XveNPJb/s1600/links+for+lucy+2014+030.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjy2gigUdBSUlTV9Nk6YIzzyxSfrwl1F0KAYshKr1PBxoYrb9MD1RycKqqMMIrmPIyzhbK4mkN-XFKD5iF9oENBRteoQWuLiJBG69JjT7fqlKsJbNMuDart4wMEK_OHh0XAmp8E8XveNPJb/s1600/links+for+lucy+2014+030.JPG" height="239" width="320" /></a></div>
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<span style="font-size: x-small;">We had tables full of the good stuff!</span></div>
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Any way you look at it, the event was a success! Lucy was a trooper, hanging out all day (nevermind that she was on her bipap in the AC, watching movies ;) ), and everyone had fun. Plus, we ended up raising $4,777.85 for Lucy's addition fund! Thanks to the incredible generosity of so many, we have been able to start construction of the addition.</div>
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Thank you to this year's Links for Lucy donors:</div>
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Hole Sponsors - </div>
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Rick and Pat Miller of Culver's</div>
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Noah's fun Charter billing managers - </div>
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Charter Communications (3 holes total)</div>
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Valle Construction</div>
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Tecre Co, Inc.</div>
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Luedtke Lumber</div>
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Jeff Kuhnz and Paul Krasin</div>
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Theresa Mutual Insurance</div>
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Stage Me to Sell</div>
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Jeff Schultz Family</div>
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Hellen Cook</div>
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Jadon's Hope Foundation</div>
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Eldorado Trailer Sales</div>
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Maury Family Dental</div>
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Prairie Medical Products</div>
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Steger Concrete and Masonry</div>
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And we wouldn't have had an event to put on without the kind people that came out, to golf, have dinner, and buy some tickets for the raffles. We were also so thankful for all the wonderful prizes that were donated for the dozens of raffle baskets. There were so many goodies there, in addition to some spectacular larger prizes! In addition, we want to say a special thank you to Jamie Steger, Jennifer Steger, and Marcia Betz for helping Lauri Betz pull the event together the day of. We are blessed to know some truly big-hearted people!</div>
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We may do a fundraiser or two over the summer, or we may not. Summer is such a busy time for us, as you saw above :) For now, we are happily listening to the whir of machines outside our windows and watching each step come together, getting us closer to the reality of Lucy's life being completely changed!</div>
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<span style="font-size: x-small;">Lucy, starting the dig. Thank you all!</span></div>
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<br />Lucy's Mamahttp://www.blogger.com/profile/01276610711792112286noreply@blogger.com0tag:blogger.com,1999:blog-3128424260492554822.post-38310547070622617382014-03-30T08:01:00.000-07:002014-03-30T08:01:47.332-07:00Trust, Faith, and Letting GoWe don't attend church in the winter; unfortunately, being in such a crowded area (our church is oftentimes full, and with good reason) is just inviting germs to rub all over us. Instead, we watch a program on Sunday mornings called In Touch with Charles Stanley.<br />
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It is astonishing how often his message for the day is <i>directly </i>in line with something that is troubling me, or something that I am struggling with, or a question I need an answer for.<br />
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I have pumped for Lucy her whole life. Manually until she had her g-tube surgery, and then with a mechanical one afterward. I have pumped through mastitis twice, and every thing else you could imagine. Hours have been spent producing what is an extremely important part of Lucy's diet. I always said that I would pump for Lucy as long as she needed it; until she was 25 years old, if that's what was required! <br />
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And I thought that it would be easily possible - supply meets the demand, right? If I pump often enough, long enough, my body should respond. I don't know how it works if you have a child who is actually nursing, but around the 2 year mark, that stopped being true. I wasn't making enough to keep up with Lucy's daily need, and it was terrifying and stressful, which made me produce even less. I started taking domperidone, and my supply was boosted - so much so that I was even able to start freezing extra! I figured I was good to go, and relaxed.<br />
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But even the domperidone couldn't keep my supply up forever. It started to drop again, and I started to be plagued by constant injuries. I took other supplements, and some worked a bit (or were at least tolerated,) some my body reacted strangely to. I switched pump parts, hand expressed until my hands cramped, cut down time on sessions. The supply continued to slowly dwindle, the injuries would not heal. Eventually, we had to alter Lucy's diet to include less breastmilk, which worked out perfectly anyway, as it seemed she was getting too much fat.<br />
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It went on for awhile, and I was able to meet the new demand. I could work around the pain if it meant that Lucy was getting what she needed; I'm her mom, it's what I'm supposed to do. But again, the amount dropped. I had developed mastitis, and while I was taking the antibiotic, I stopped the domperidone. Without it, I was making nothing, but continued to pump so that I could resume it afterward. After I started it again, though, I was only making half of what Lucy needed, and it never returned to the full amount.<br />
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I had to start reaching out for breastmilk donations. I was also dealing with some health issues; nothing major that I could tell, just some fluttery heart business. I cut my sugar intake, avoided all caffeine, and for the most part, it seemed to resolve.<br />
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Then someone shared an article online about domperidone and its relation to heart issues. I was reassured that these issues were only seen with the IV form of the drug, and in women over 50, with underlying conditions. I absolutely believe that, but I couldn't shake the feeling that I was meant to see that article, at that time, for a reason. It nagged at me, so I prayed about it.<br />
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It was an extremely difficult decision to discontinue the domperidone. I knew what it meant for my supply. I wasn't sure that it was in any way affecting my heart, didn't see how it could be, but stranger things have happened. Hello, SMA! Since it had been a serious enough issue for my doctor to order an EKG at one point, I didn't feel that taking any chance that it may affect me was a prudent choice. Noah and I are the only ones who know how to care for Lucy, and if something were to happen to me, I'm not sure what they would do.<br />
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At first, I was still getting an ounce a day. I thought that I'd keep pumping; I could just add that ounce on top of the donor milk, and at least Lucy would be getting a little bit of the antibodies I was producing that were relevant to what we were exposed to. And then it dropped lower.<br />
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And I started to think about how much stock I was putting in her getting <i>my</i> milk. Not just breastmilk in general, but <i>my</i> milk. How I was providing her with antibodies. How she hasn't been hospitalized with illness since she was 4 months old. How she rarely gets ill at all, period, even when we KNOW she's been exposed to illness. And I started to think about how much credit I gave myself for that happening. After all, she's getting my milk; I'm making the painful sacrifice to provide this for her, so her good health must be a result of that, right?<br />
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I realized that my mindset about it had nothing to do with trusting God to take care of her; instead, I was giving my own actions weight that they may not deserve. It's true that we produce antibodies that are carried through the milk, and that can help fend off and fight off illness. The fact is, though, that there are other children who get exactly that, and are sick more frequently than Lucy. I was seeing it as a situation that I had control over, through my actions. With SMA, you have very little control - sure, you can utilize breathing interventions, choose diet options, practice lockdown and all of the germ avoidance you can - but ultimately, there are situations we see where everything has been done "right," but life still ends. We can control all of those things, but we can't always control the outcome. And that's a hard, scary thing to face.<br />
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So in my continuing to pump, long after it ceased being comfortable, or even tolerable, long after I was making enough, or even anything that would make a difference, I was clinging to this imagined control. I'm not saying that pumping isn't the greatest thing to do for an SMA kid if you can, if it works in your life - it is! It's wonderful, and I know there are other mothers who have embraced the long-term pumping lifestyle - some for longer than me, which is SO amazing and admirable. But I've come to realize that I was clutching at it for the wrong reason. I was seeing it as a way for me to control Lucy's outcome... putting an almost superstitious faith in it. In reality, God used me to produce for her when it was useful in our lives. When it turned into me trusting the product of the pumping more than trusting God to take care of her, it was no longer useful. That's not to say that we should abandon all precautions and preventative measures and proactive practices in favor of "trusting God to take care of her" - He imbues us with the common sense to make the right decisions for her, prudent choices, practical choices, and we are not to tempt Him. But I needed to come to grips with the fact that there is nothing that I can do to <i>guarantee</i> Lucy's life. There are certainly steps I can take that have been shown to keep her healthy and strong. But it's not a guarantee. All I can do is trust that God <i>can</i> take care of her, with or without my help, and will be with her throughout her life. How long or short that life is is ultimately His will. When Lucy has accomplished her purpose on this Earth, it will be her time. My job is to make sure she is happy, and healthy, and comfortable, and to be a good example of faith. <br />
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So I'm quitting. I'm letting go of this "control." I was very scared to make such a final decision. I've seen other SMA parents doing the milk search online - it's not always easy. But I've reached out, and donations are already coming in, and I'm so grateful and so relieved. God is working through so many to get Lucy the food she needs, and seeing so many step forward has affirmed that my decision was the right one (along with lots of praying, and back to back sermons addressing <i>exactly </i>my situation with fear and trust and faith.) Prayers are always appreciated - that she will tolerate the milk from the new donors, and that her illness-free streak will continue.<br />
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We are still working toward Lucy's addition, and some new steps have been taken! It's closer than ever! My next blog post will address all of that :) Thank you for your unending support!<br />
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<br />Lucy's Mamahttp://www.blogger.com/profile/01276610711792112286noreply@blogger.com1tag:blogger.com,1999:blog-3128424260492554822.post-36687388948171227362014-01-04T08:26:00.000-08:002014-01-04T08:26:23.746-08:00The What IfsSMA progresses.<br />
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In a cruel twist, your child starts out his or her life as strong as they will ever be (barring a viable therapy or cure, of which there is none yet available.) They can have peaks and valleys, they can learn to use their strength to their advantage and manipulate their body in new ways, but eventually, there is decline. That is the reality of SMA. Twitching and tics in new areas. Contractures in new joints, loosening in others. Movement slowing, stopping.<br />
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I try not to be obsessive about it; I suppose thinking that if I don't give too much credit to the fact that it's happening, maybe it will stop happening. Thinking that if I give voice to the changes, that will make them real - as if they won't happen if I keep my fears in my head. But keeping your fears contained can be a dangerous business.<br />
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I worry. A lot. Sometimes it feels like constantly. About everything. In reality, I can get through times of activity fine; school, projects with Lucy, reading stories. And I suppose it's worse in the winter - there is illness swirling all around us, threatening to sneak into our home. Reading updates on others with SMA who are sick, in the hospital, or who have taken a turn for the worse seems to be a daily occurrence. <br />
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We live a fairly routine life. Lucy adores her routine, and we've found this winter that if it's disturbed for too long, we have one unhappy little girl. The frightening thing, the worry that keeps me up at night, is that this routine that we've established, the one that brings our family such joy, is one that can be thrown into upheaval quite easily. One of us is sick, Lucy is quarantined to her room, and it's done. But what if something *really* threw our life into chaos? What if something happened to Noah? What if something happened to me? And what if something happened to Lucy, something I couldn't save her from?<br />
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I always tell people you can't focus on those thoughts, there's no point, it's not helpful. And there isn't, and it's not - but in the wee hours of the morning, it can be hard to think about anything else. I read in another special needs mom's blog post recently that as a special needs parent, you're always waiting for the other shoe to drop, and I really felt that finally my feeling had been articulated. You've been the recipient of some horrible, earth-shattering news. You grieve it, dust yourself off, do what you need to do for your child. You build a life, and in our case, it's a wonderful life. It's a life I love so much, and feel so blessed to live - and I think that might be why I'm so worried. Because the better I have it, the more there is to lose.<br />
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I was reading the story of Christ's birth this morning, and got to the part in Luke where Mary and Joseph run into Simeon in the Temple, and he tells them how great Jesus will be. He also tells them that many will oppose Jesus, and that "a sword will pierce [Mary's] very soul." How must that have felt? To know that there would be that kind of pain lying ahead for her? And that the pain would have to do with her child... I don't know that there could be a greater pain. And that's another thing I worry about. Possible pain. Possible horrifying, excruciating, unbearable, unimaginable pain. And I stuff all that down too, because I fear that giving voice to it will speak it into reality.<br />
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So I've been praying about it, a lot. Obviously, to keep our little family safe, and healthy, and to help us get our home into the safest possible environment for her, but also for trust, and faith. These things are present in me, but they need to be built up. Facing a monster like SMA means that they need constant shoring. And I don't think that's something I can do on my own, so I'm asking for your prayers for me, this time. Pray that I learn to let God shoulder the fear and anxiety at all times, not just times when my mind is preoccupied. Pray that I can retain the healthy knowledge and awareness that the fear may give me, but shed the crippling aspect that it can have.<br />
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And thank you for always praying for Lucy. She has had a healthy winter so far! We're in the north, so this season is far from over, but we are hopeful that with careful germ avoidance, and keeping her away from all ill people, we'll be able to emerge in spring with a healthy, happy, well-rested Lucy bear :)<br />
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<span style="font-size: x-small;">Lucy, chatting with Daddy after he got home from work.</span></div>
<br />Lucy's Mamahttp://www.blogger.com/profile/01276610711792112286noreply@blogger.com3tag:blogger.com,1999:blog-3128424260492554822.post-52597303552612145372013-12-26T16:32:00.000-08:002013-12-26T16:43:50.549-08:00We're so glad it's Christmas vacation!"This old house... sure is lookin' good..." Can't get enough of that movie! And we are certainly glad it's Christmas vacation around here. I know lots of parents loathe the dreaded "v" word, but when you participate in every aspect of your child attending school, it's a vacation for you too.<br />
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We have been keeping so busy this season, and I've been terrible with keeping the blog up. Lucy's been continuing school via Skype...<br />
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<span style="font-size: x-small;">In her pjs, of course.</span></div>
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...and had her first Christmas concert before the break!</div>
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<span style="font-size: x-small;">Shakin' it to "Jingle Bells."</span></div>
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We've also been working on a lot of projects at home...<br />
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Pinterest is full of great inspirations, and we tried our hand at several popsicle stick ornaments this year. Some days she was interested in the process, some days she just wanted to choose materials and ignore me while I did the work ;)<br />
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We've also managed a lot of snuggling and nap time - is there any activity better suited to winter?<br />
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Bert's really gotten the hang of snuggle time :) And I think Lucy is finally letting go of the last vestiges of animosity over having to share attention; probably mostly because Bert is requiring far less attention these days.</div>
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We got lots of snow dumped on us just recently, so we took advantage and headed outside for some sled time.</div>
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And, of course, Christmas was full of relaxation and joy... and maybe a few presents :) Matching jammies for Lucy and her newest favorite friend, and we were sent to enjoy hanging out at home for the day.</div>
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We have also had a surge of donations for Lucy's addition. In this season of giving, people have really opened their hearts, and shown us that they are just as excited to get Lucy closer to her addition as we are. And that makes me feel so incredibly blessed. Not all of the events this season have been memorable in a good way. Noah was sick for a week in early December, which meant that Lucy and I were isolated to her room. Lucy is not at all a fan of her routine being disturbed, and on top of that, could not see her Daddy. She was refusing to nap because we couldn't do our normal snuggle on the couch, and though she is older, she really needs a period of sleep, not just rest, in the afternoon, to keep her going strong. She was getting crabby and starting to tantrum, and one night her secretions got the best of her, and she had a scary episode. We managed to get her airway cleared before her numbers got too serious, but it was a definite reminder that Lucy just isn't as strong as she was when she was younger. It's something we don't like to talk about, or think about, but it's there. She tires more easily, and cannot recover herself as well as she once could.</div>
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Having this addition done this summer is imperative. We spoke with our contractor last week, and got a rough estimate, since we weren't really sure we were aiming for the right number. They confirmed that yes, it's going to cost around $90,000 to do the addition. A daunting number for sure, but we are determined to make this work.</div>
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We added in all the amazing, generous donations from family, friends, and businesses recently, and our total in the addition account right now, after having spent the money to secure the extra lot, is $17,500. So to date, we've actually raised close to $25k.</div>
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Realizing that, barring a miraculous lottery win or a celebrity adopting our fundraiser as their pet cause, we are not going to have the $90k raised by this spring. What we are hoping for is to have at least $30,000 raised, and then to get bank approval to take a second mortgage out on our home for the rest. We are praying that this extreme financial step is one that will be feasible for us, because we just can't keep hauling Lucy up and down, and she will not tolerate being isolated to her room.</div>
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So we ask you to pray. Pray for generous hearts from people who can afford to give, and pray that we will be able to swing the difference on our own. And share Lucy's <a href="http://donation%20page/" target="_blank">donation page</a> if you feel so inclined. We are so grateful to you all for supporting us. This is really going to change Lucy's life - she won't be isolated when a parent is sick; it will be the sick one who is isolated, and rightfully so. She will have a bathtub that she can be safely lifted in and out of; one that she can stretch out in and wiggle, and not have to worry about running out of space. She will have a shower with a safe chair, so that she can still be bathed on days when her secretions overcome her. Her bedroom will look out onto our yard, where we are planning on Make-a-Wish building her a playset, and a flowerbed. This will be a haven for Lucy; a place for her to grow and thrive and be taken care of. And it will be because of the wonderful people that God has put in Lucy's life.</div>
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Lucy's Mamahttp://www.blogger.com/profile/01276610711792112286noreply@blogger.com0tag:blogger.com,1999:blog-3128424260492554822.post-84487795042975812772013-11-21T07:46:00.001-08:002013-11-21T07:46:23.996-08:00Culver's Fundraiser Success!Back in October, we had a night of fundraising at all three of our local Culver's locations. For people who don't know what a Culver's is, they are the home of the Butterburger, delicious frozen custard, and the most amazing cheesecurds ever to grace this Earth. No joke.<br />
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Rick and Pat Miller generously hooked us up with all three locations. They promoted all over the place, got us radio spots, and set it up so that we could have family and friends help out at each location, bringing out food and answering questions from the customers. They also allowed us to have donation cans out at each restaurant for the whole week.<br />
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We were told by the restaurant managers that it was their most successful fundraiser to date! Lucy received a portion of sales, and the donations from the canisters, which ended up totaling a $2,200 donation! What a blessing, and another step closer to Lucy's addition!<br />
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We are so grateful to Rick and Pat, the managers at each of the Culver's locations, and our wonderful friends and family, for volunteering and working together to make this fundraiser so successful! We are so grateful, and we'll never be able to express just how much we appreciate this.<br />
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<span style="font-size: x-small;">Our family with Rick Miller - and yes, our house is full-on Christmas. Don't hate.</span></div>
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We are so happy that we are getting closer every day to Lucy's addition. There are a couple of fundraisers going on right now, including a <a href="https://www.facebook.com/events/717878498241126/?ref_dashboard_filter=upcoming" target="_blank">Partylite candle sale</a>. We are hoping to get another public fundraiser set up soon with another local restaurant, so stay tuned! It is so amazing to open my email to find messages from people wanting to reach out and help us.</div>
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It's important that we stay on track with the fundraising, and in line with our hopes to start the addition late next spring. Lucy is at an age where she is deciding she doesn't need naps in the afternoon anymore. The problem with that is that her body still needs that rest. She has been having some issues in the evening, when she starts to get tired, that make it hard for her to get her bath. If she's too tired, she can't manage her secretions as easily, and it's more work for her to breathe. She has had to have a few table baths, which are not ideal for her, and we've had to rush her to her room and her bipap on a few occasions as well. We are looking forward to the day when we will have the option to do the bathtub when she can tolerate it, but have the choice of a shower with a supportive shower chair, for when she needs the extra help!</div>
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Thank you all, once again, for your prayers and support! We will get there!</div>
<br />Lucy's Mamahttp://www.blogger.com/profile/01276610711792112286noreply@blogger.com0tag:blogger.com,1999:blog-3128424260492554822.post-54629041321770358392013-10-09T16:45:00.000-07:002013-10-09T16:45:49.144-07:00Field trip!A couple of weeks ago, we were Skyping with Lucy's class, and the connection was awful. Picture was blurry and choppy, sound was garbled, it kept freezing, and the call dropped about three times.<br />
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Lucy is not always on her best behavior for Skype class, but sometimes I cut her some slack - what 4-year-old would be completely attentive to something they can't consistently see or hear? That day, though, she got quieter and quieter every time we got the call back, as if she thought perhaps if she was well-behaved, the screen would work.<br />
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That made me sad. We do our best to make safe, yet fulfilling choices for Lucy's life, but it can be hard to be sure you're striking a happy balance. Lucy is miserable when she is sick - worse than that even, she's terrified. She wakes up choking in her sleep, and that scares her immensely. So we do our best to avoid her being ill, and we all know that once school is back in session for the year, the germs are rampant. Little ones are sent to school with symptoms, are contagious before anyone even knows they're ill, and let's face it - small children are not bastions of germ control. If I had a dollar for every time I heard Lucy's teacher tell someone not to use their finger, to get a tissue, or to cough into their arm... I'd be able to fund Lucy's house addition! ;)<br />
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So home we stay, with our Skype connection that has fortunately vastly improved since the beginning of the year, and in-home therapies. And Lucy usually seems quite pleased with that setup; she can get a bit annoyed when she's not doing something she completely loves, and tends to shut out the offending activity with squishing her eyes shut and loud hums. For school, she's often chatty when she shouldn't be, but overall enjoys the songs and stories. She fits right in with the rest of the characters in her class ;)<br />
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That day, when class was over, I had a nice chat with Lucy. I really felt she was listening, which is hardly ever the case - usually she greets my sermons with the aforementioned squishing and humming. Whether it was because she was tired or not, I took advantage of my seemingly captive audience, and we talked about why she isn't in the class with the rest of the kids, and when I asked her if she understood, she smiled. I told her we were going to try to take her on a field trip with her class, and asked if she would like that, and she smiled. I really felt, which is rare, that she listened and gave me honest feedback.<br />
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We got over our utter terror at taking Lucy out with a large group of children during a time when it's very probable one of them is ill, and I was making preparations to take her on her field trip. A week beforehand, we heard that there had been a case of whooping cough identified in our district's high school. Since we didn't hear anything locally beyond that one confirmed case, we decided to go ahead with plans for the trip to The Little Farmer, a local apple orchard and pumpkin farm. They were set to learn about apple processing and the bees that they keep there.<br />
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The day before, I got an email from one of her teachers, saying that they had decided to cancel the class's field trip, due to various circumstances. They planned instead to have a fun day on the lawn of their school - would Lucy like to come to that instead? I said absolutely! Cutting our travel time to minutes and shrinking Lucy's exposure by a hundred kids was something that was definitely palatable to me! <br />
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So we packed Lucy up today and headed to her school, to meet her class in person for the first time. The kids were walking out to the lawn as we pulled in. I was uncertain how it would unfold; last year, she had kids from her class not recognize her when they first met her in person, even after Skyping with her all year, because she was laying down, and it can be quite a bit to take in - seeing her with all of her machines on her chair can be a bit daunting for adults, much less children.<br />
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The kids had formed a circle for games when we started rolling Lucy up. I heard her teacher remind them to keep a little distance from Lucy and to keep their hands to themselves. One of them spotted Lucy and shouted that she was there, and it was all over. I heard a teacher say "Keep in the circle!" as a few eager kids surged forward. They were all so excited to meet her and say hi! The teachers managed to wrangle the kids back, and Lucy got to be a part of her very first class photo.<br />
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She was really loving being surrounded by a bunch of her peers shrieking "Cheese!" It was so wonderful to see them all jockeying to see her or be near her, or talk to her.</div>
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Lucy also got to be a part of an age-old rite of passage for childhood: the gym parachute. I <i>loved </i>the parachute when I was in grade school, as I'm sure you did. Somehow, I remember it being bigger... anyway, Lucy got to grab the first handle - what an honor!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8eGPoX6sdHKtsWBhixOW2-i7D-LjSo5kwHqGX3pMkz3Tkr0rjxlN_tXhWjfaJtVWfjqDYNRN13QqPZW9WqjxbMMTNz_fxsM83tGm3biOS-WfFQUlC8DAEEOlPSQlqSSuAbDUUYAYWTBQS/s1600/IMG_2257.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8eGPoX6sdHKtsWBhixOW2-i7D-LjSo5kwHqGX3pMkz3Tkr0rjxlN_tXhWjfaJtVWfjqDYNRN13QqPZW9WqjxbMMTNz_fxsM83tGm3biOS-WfFQUlC8DAEEOlPSQlqSSuAbDUUYAYWTBQS/s320/IMG_2257.JPG" width="320" /></a></div>
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<span style="font-size: x-small;">A teacher warned me that the kids got a bit... boisterous... so Lucy settled for guiding </span></div>
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<span style="font-size: x-small;">my hand, </span><span style="font-size: x-small;">so her arm wouldn't get ripped off</span></div>
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<span style="font-size: x-small;">Whee! She loved the parachute! Since she's a fan of bouncing and spinning and</span></div>
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<span style="font-size: x-small;">violent actions in general, I knew she would.</span></div>
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After the parachute, a few girls came up to say hi to Lucy, so we decided to do formal introductions for everyone. The kids were so cute telling Lucy their name, and it was nice see the faces behind the voices that we hear on Skype.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYBL9g7Ng3BM8JDbEZRvHJGX8Qt3o3i2KZ1PVxtiOKEgorJGmS7gn-ZOqwZtBPXtc1cAAObfxTEcaQLavnWUrFMO3nDvjuhkdJSGvk5XBMkqtK4V35pHX35mt_a2PAoygb_jgAoxC6wqGr/s1600/introductions+safe.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="220" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYBL9g7Ng3BM8JDbEZRvHJGX8Qt3o3i2KZ1PVxtiOKEgorJGmS7gn-ZOqwZtBPXtc1cAAObfxTEcaQLavnWUrFMO3nDvjuhkdJSGvk5XBMkqtK4V35pHX35mt_a2PAoygb_jgAoxC6wqGr/s320/introductions+safe.jpg" width="320" /></a></div>
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Since everyone was as settled as 4-year-olds can be at that point, it was time for a story. There was an old lady who swallowed a pie...</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9aC3GJZTLYNCXT_qqieIY8GI7yTQv7F58q0wTVnG6GiwxU1-Zax_HwWDd6FklWLhLTVzd_7rfXMWbS8e6QgrHTc-_T5LIZz_pPThmXo-XD5pcKZB_GSHBA4phtmco54Gl4ZoksHGKeCe3/s1600/story+safe.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9aC3GJZTLYNCXT_qqieIY8GI7yTQv7F58q0wTVnG6GiwxU1-Zax_HwWDd6FklWLhLTVzd_7rfXMWbS8e6QgrHTc-_T5LIZz_pPThmXo-XD5pcKZB_GSHBA4phtmco54Gl4ZoksHGKeCe3/s320/story+safe.jpg" width="320" /></a></div>
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<span style="font-size: x-small;">Lucy is not always attentive during storytime, and today there was </span></div>
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After storytime, the kids packed up to head back inside. Lucy got to be in the line. I know this probably sounds like a ridiculous thing to be excited about, but it's picture-worthy in my book.</div>
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They were going to go right through the building, back outside to recess, and we were going to join them, but Lucy was looking a bit tired by that point, so we decided to call it a day and head home for naptime. Everyone lined up for goodbyes - a familiar chorus we hear every day she does Skype with the class. They really do love her being there; I was told that the kids were very excited about meeting her today, which made my heart swell with joy.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhy0hXxr62d1IghEs0RWCCeB30mXMand0RkGRyfFkRywTAo_tHEeArmdXx_PKThYLPUOzygswUDBBDSmerRM9vumImmIlhK5Zdnt7XGNlgCdvXiKQ9mo52e5-syzqakuANl5T244sjeYjQD/s1600/goodbyes+safe.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="243" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhy0hXxr62d1IghEs0RWCCeB30mXMand0RkGRyfFkRywTAo_tHEeArmdXx_PKThYLPUOzygswUDBBDSmerRM9vumImmIlhK5Zdnt7XGNlgCdvXiKQ9mo52e5-syzqakuANl5T244sjeYjQD/s320/goodbyes+safe.jpg" width="320" /></a></div>
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Now we just watch Lucy for the next week for any signs of illness. There was some sneezing going on during class, but no one touched Lucy, and we were outdoors, so I'm hopeful that we'll be in the clear. I feel so blessed that we had this somewhat safe setup for Lucy to meet everyone, and I know she enjoyed it too, although you can see by the last picture that the sun is in her face and she's ready for a nap.</div>
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<span style="font-size: x-small;">Which she took promptly when we got home.</span></div>
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By no means am I ready to start hauling her into her classroom every day to lick table surfaces, but I'm glad that we took this little step to have her included in her class. The kids already love her so much from seeing her on Skype, and I really feel like this cemented her as being a part of their class. Yay for inclusion!</div>
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The next post will be when we get our numbers from the Culver's fundraiser we had last night for <a href="http://www.gofundme.com/2jcic8" target="_blank">Lucy's addition</a>! From the sound of it, a very successful night!</div>
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Lucy's Mamahttp://www.blogger.com/profile/01276610711792112286noreply@blogger.com0tag:blogger.com,1999:blog-3128424260492554822.post-84566030882959934532013-09-06T15:22:00.000-07:002013-09-06T15:22:02.880-07:00Sesame Street Live, Take TwoIn May, we took a trip with Lucy to Chicago - our main reason was to see the Sesame Street Live performance. You can read all about how that went <a href="http://lucyshopeforacure.blogspot.com/2013/05/almost-too-late.html" target="_blank">here</a>. Needless to say, not the bright spot we were hoping that seeing Sesame Street characters would be for her.<br />
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I found out that Sesame Street Live was going to be headed to La Crosse in August, with their brand-new show. I wanted Lucy's experience with it to be so much more than what it had been, so I contacted the La Crosse Center, to see if they were wheelchair accessible, and if we could be seated in an area where Lucy would be able to see the stage.<br />
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I received a very nice reply back from Art Fahey, saying that they could accommodate her, and then corresponded with Nikki Kimpton, setting up ticket purchasing and arrangements. We wanted Lucy to actually get to meet some of the characters this time, so we got the Sunny Seats package, and started to plan our little trip.<br />
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I was feeling a bit nervous; the trip to La Crosse was going to be a longer drive than the one to Chicago, but with a much less harried pace. We were planning no other activities, and told no one about our trip beforehand. We wanted it to be laid back and casual, and didn't want to tax Lucy too much. Of course, then we discovered that the days we were meant to go, it was supposed to be insanely humid, with the heat index climbing to over 100 degrees. We decided to book an extra night, and drive Lucy in the night before, to avoid the ridiculous temperatures. Our van's AC isn't exactly frigid, and Lucy does not do well in the heat. At all.<br />
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We made the drive uneventfully and settled in for the night. The next day we took it easy in the hotel, and went out for a little dinner and ice cream.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLCA4rRElGoQeG-37ByCuaxvkHTCIuA4rg9GM-4MvY1BZzpJQNC3txyCIsFyJfDOVCUAXGRHtJ_HHVpSehKhTQEWnJcNzK2VsKBoyPtyojpm9sN17j2-Yq67C8c7Uldf8v2-EPDiFcFFi6/s1600/IMG_9817.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLCA4rRElGoQeG-37ByCuaxvkHTCIuA4rg9GM-4MvY1BZzpJQNC3txyCIsFyJfDOVCUAXGRHtJ_HHVpSehKhTQEWnJcNzK2VsKBoyPtyojpm9sN17j2-Yq67C8c7Uldf8v2-EPDiFcFFi6/s320/IMG_9817.jpg" width="240" /></a></div>
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<span style="font-size: x-small;">Hmm, what flavor?</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpOKIujl31nekRsVNhRxgryTXxKpIgNGXHd-XQcZSzszqbKC26Na8vH6gh95j2pRInNzz6GE0ok0F5p9mkxeqMFrBt1f0PXLV0AcPbRiB8yv9tiqEemNvkFGWxiOqbtKKPBdG8IrW9nBwz/s1600/IMG_0028.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpOKIujl31nekRsVNhRxgryTXxKpIgNGXHd-XQcZSzszqbKC26Na8vH6gh95j2pRInNzz6GE0ok0F5p9mkxeqMFrBt1f0PXLV0AcPbRiB8yv9tiqEemNvkFGWxiOqbtKKPBdG8IrW9nBwz/s320/IMG_0028.jpg" width="240" /></a></div>
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<span style="font-size: x-small;">Went with chocolate peanut butter. Good choice.</span></div>
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Then we headed back to get ready for the show at La Crosse Center, which was next door to our hotel.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMNhNS-eQxWIpYfmnWzVGIZCKKn4ul0VoiCGmwHmz2CasJs6aMIaiUFEHM995AvuSkV8A3W30kuyimgp_PAD-orHG9Z0EghQDSjGWAk2Oo8VsT9YEqfVP3Fv1j0kkb5qlKN1NNqdsLWqi-/s1600/IMG_8222.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMNhNS-eQxWIpYfmnWzVGIZCKKn4ul0VoiCGmwHmz2CasJs6aMIaiUFEHM995AvuSkV8A3W30kuyimgp_PAD-orHG9Z0EghQDSjGWAk2Oo8VsT9YEqfVP3Fv1j0kkb5qlKN1NNqdsLWqi-/s320/IMG_8222.jpg" width="240" /></a></div>
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<span style="font-size: x-small;">Getting ready means nap, right? I wish, Lucy... I wish.</span></div>
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The truck was parked right outside the venue, so we had to get some shots.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRIHNaar_r7hA2zCNS9u4K1RrG_iPp34_o0v3_YCFeUO-59syASnOfDIi-Tg0k4PGbSy9RGACYVVj5hpQWGCdRyfwwltuo1imVLjHyzG1IIUuBAyOCaFjAINChz2ob3hMeIF6BusIMcs46/s1600/IMG_9012.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRIHNaar_r7hA2zCNS9u4K1RrG_iPp34_o0v3_YCFeUO-59syASnOfDIi-Tg0k4PGbSy9RGACYVVj5hpQWGCdRyfwwltuo1imVLjHyzG1IIUuBAyOCaFjAINChz2ob3hMeIF6BusIMcs46/s320/IMG_9012.jpg" width="320" /></a></div>
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<span style="font-size: x-small;">It was a surprise trip, so this was the big reveal :)</span></div>
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<span style="font-size: x-small;">We're going to Sesame Street!</span></div>
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<span style="font-size: x-small;">Had to get pictures with them all!</span></div>
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We got there a little early - the lobby was empty except for one other mother and her little boy, so we stood with them, in the designated "Sunny Seats" spot. The boy was fascinated with Lucy :) Suddenly, from behind us, someone asked "Is this Lucy?" We turned around, and a man who worked at the Center was walking toward us. He introduced himself as Rich, and said he would be taking care of everything for us that evening. It was red carpet treatment for Lucy after that! She was first through the door into the meet and greet room - </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEit9KKMxiTgcLd3T3Mzzi6qJIiGwpyvNIphGGJqRbnB2MnEzktsLm6grWlzZoLSxrrLlNsQsOHuZGcuzhdvEbftTjG5dCENTHb4MDcbEaJgdggWFcJYNJmQrLKpQwIjP8kmba3COwkyCxzt/s1600/IMG_6313.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEit9KKMxiTgcLd3T3Mzzi6qJIiGwpyvNIphGGJqRbnB2MnEzktsLm6grWlzZoLSxrrLlNsQsOHuZGcuzhdvEbftTjG5dCENTHb4MDcbEaJgdggWFcJYNJmQrLKpQwIjP8kmba3COwkyCxzt/s320/IMG_6313.jpg" width="240" /></a></div>
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<span style="font-size: x-small;">Hi guys!</span></div>
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<span style="font-size: x-small;">It's just not as fun when you're not looking at them.</span></div>
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... and first in line to meet Elmo and Ernie (Ernie is her current second favorite, so that was great!)</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcwT-aVVt2NqFEy6UlAVl52orRmcg0foqGX5_lMdaf72PtvT8RtuSrXnVNS2wn-yy46xx6QVpbh2V_USESH5vJT5nN4U5NVHK51trRyhRs5vBh9t2zDuQwH_zqo9kVC_mnhWcElSOv50O3/s1600/IMG_6391.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcwT-aVVt2NqFEy6UlAVl52orRmcg0foqGX5_lMdaf72PtvT8RtuSrXnVNS2wn-yy46xx6QVpbh2V_USESH5vJT5nN4U5NVHK51trRyhRs5vBh9t2zDuQwH_zqo9kVC_mnhWcElSOv50O3/s320/IMG_6391.jpg" width="320" /></a></div>
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We let Ernie know that he ranked near the top, so he came over to express his gratitude.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRcuS_uXZm23a18Os4ARzEvqCcFyrRh8uel01ArarkNumSnPM9IjliFjDJBTtb6iThe4EIPr-u_bITgGLTPNmg92oKimIU1CCMtQ3Igd2stThS0_32p_1spG2cJFoBhxV1TcVHdBoX5CoP/s1600/IMG_3081.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRcuS_uXZm23a18Os4ARzEvqCcFyrRh8uel01ArarkNumSnPM9IjliFjDJBTtb6iThe4EIPr-u_bITgGLTPNmg92oKimIU1CCMtQ3Igd2stThS0_32p_1spG2cJFoBhxV1TcVHdBoX5CoP/s320/IMG_3081.jpg" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbDmwt_wpZAZ2PsLYOljHX0D7zuQl19s6MKq5OdVRDbg2-DlgB2Nvxj_cs0ikTtmkJH-f5Ye5Dks2EXt06TufZpfxq7-oTv1kXLeSNH1Cy6Pgc1h1vGBGSjcEXaoZVFEXZk6X3c9YkMW6N/s1600/IMG_2147.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbDmwt_wpZAZ2PsLYOljHX0D7zuQl19s6MKq5OdVRDbg2-DlgB2Nvxj_cs0ikTtmkJH-f5Ye5Dks2EXt06TufZpfxq7-oTv1kXLeSNH1Cy6Pgc1h1vGBGSjcEXaoZVFEXZk6X3c9YkMW6N/s320/IMG_2147.JPG" width="320" /></a></div>
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<span style="font-size: x-small;">This was his reaction when we told him he was one of Lucy's favorites.</span></div>
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<span style="font-size: x-small;">These guys are in character and fully invested the whole time, it's great!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHP8ytkWYyvs54l-WRhG9NhmQrfSLBetBG5paAeNs_zT_eQPaM96g6kzJmr_RGnQ4x7VTlUQ9wgVTfQxV_LFxlUanswtresAwfR3Pu6iJ3eHgBVxD-553q6H1Y0MfTdyaPwqZ_KtGkXTDi/s1600/IMG_2149.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHP8ytkWYyvs54l-WRhG9NhmQrfSLBetBG5paAeNs_zT_eQPaM96g6kzJmr_RGnQ4x7VTlUQ9wgVTfQxV_LFxlUanswtresAwfR3Pu6iJ3eHgBVxD-553q6H1Y0MfTdyaPwqZ_KtGkXTDi/s320/IMG_2149.JPG" width="320" /></a></div>
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<span style="font-size: x-small;">Admiring Lucy's bow. She had a whole special outfit... but it was packed into a </span></div>
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<span style="font-size: x-small;">suitcase which Noah neglected to bring. Poor guy took a lot of heat for that. I'm</span></div>
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<span style="font-size: x-small;">working on not sweating the small stuff ;)</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGvFbiPhYvKXvYxPkIYXU1uPloby6KOs4X_egLaklIQhTQZElRkb-YR5y80GPREBo3GdUqZa_IDICkDaP3kkwvYcuovzQAEerpC9KSQ8Va3Q6LeBV8xBswpITM-8t8gJQ1DQOJJB1tZIP3/s1600/IMG_2145.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGvFbiPhYvKXvYxPkIYXU1uPloby6KOs4X_egLaklIQhTQZElRkb-YR5y80GPREBo3GdUqZa_IDICkDaP3kkwvYcuovzQAEerpC9KSQ8Va3Q6LeBV8xBswpITM-8t8gJQ1DQOJJB1tZIP3/s320/IMG_2145.JPG" width="240" /></a></div>
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<span style="font-size: x-small;">Saying goodbye until later!</span></div>
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Rosita was also wandering around the meet and greet, presumably to keep the wee ones from ganging up and just rushing the wait line.</div>
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Lucy did some coloring, too!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsLDFr7G-W5CZdXJFcNkFphwJmNlum0iVGIihpkhMdIy55_UD1b01a-1MiI9sGTm7ZhTaXoWwpc589a8fR9eVC7EeceWp7KSxbURw_7mCKipGQj6ALJZnU8b5ku-dXWGttXulwhs8DY8R8/s1600/IMG_2139.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsLDFr7G-W5CZdXJFcNkFphwJmNlum0iVGIihpkhMdIy55_UD1b01a-1MiI9sGTm7ZhTaXoWwpc589a8fR9eVC7EeceWp7KSxbURw_7mCKipGQj6ALJZnU8b5ku-dXWGttXulwhs8DY8R8/s320/IMG_2139.JPG" width="320" /></a></div>
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She was very happy, and I think a bit star-struck, as we made our way into the theater.</div>
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We were escorted by Rich, who led us down to the front row, then rearranged chairs and took out chairs that they had killed to make sure that we had enough room for Lucy's stroller in the row. After some shuffling, we were settled in! We had to get Lucy a pendant, to go with the one from the last show.</div>
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We admired the stage and waited for the show to start. Of course, there were small children hacking all around us, so we had to do our best to position Lucy away from them, while trying to refrain from shouting at their parents. (Yep, that's right. Get your kid to cover their mouth, or do it for them, if you're taking their germy butt out in public.)</div>
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The stage was so pretty! And the show began. It was the world premiere of their "Make a New Friend" show, so Lucy got to be one of the very first to see it.</div>
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<span style="font-size: x-small;">Lucy was in awe :)</span></div>
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At intermission, we sat Lucy up to talk about what she thought of the show.</div>
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<span style="font-size: x-small;">Giving Daddy a thank-you kiss :)</span></div>
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<span style="font-size: x-small;">I think it's starting again!</span></div>
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Lucy was in the front row, so as the characters came off the stage, it was easy for them to go by and stop to say hello to Lucy. She got to shake hands with Ernie again, along with Zoe, the Count, Bert, Telly, and Grover - I was nowhere near quick enough to get pictures of these, unfortunately! No Cookie Monster, but that's okay, because he came to visit us at our house, thanks to a friend with connections ;) (This was affiliated more with the Ripon Cookie Daze, less with Sesame Street Live!)</div>
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The show was pretty spectacular, finishing up with a big elephant and lots of dancing from some incredibly talented performers.</div>
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<span style="font-size: x-small;">Parents were overheard telling their kids to go up and maul the characters - to just</span></div>
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<span style="font-size: x-small;">were totally awesome and danced with the kids a little before breaking free.</span></div>
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Overall, a big success! We got out without any hassle, went back and packed up the few things left in our room, and made the three hour drive home, arriving around midnight. We were tired, but we wanted to avoid the heat again, and it's always nice to sleep in your own bed :)</div>
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I want to say a huge thank you to Art and Nikki and Rich, at La Crosse Center, for making this experience so wonderful! Rich made sure that our every need for Lucy was taken care of once we arrived, and it was such a relief to have people who were willing to do anything to help. We would visit that venue again in a heartbeat!</div>
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<br />Lucy's Mamahttp://www.blogger.com/profile/01276610711792112286noreply@blogger.com0tag:blogger.com,1999:blog-3128424260492554822.post-72909621821367242172013-08-23T18:15:00.000-07:002013-08-23T18:15:27.743-07:00It's Ours!The property next door to us has been vacant for awhile due to <a href="http://lucyshopeforacure.blogspot.com/2013/02/fire-next-door.html" target="_blank">the house burning up</a>. We thought that it would be wonderful to be able to purchase it in preparation for our home addition - and a few weeks ago, thanks to donations (especially a large donation from <a href="http://www.lexxhowellfdn.blogspot.com/" target="_blank">The Lexx Howell Foundation for SMA</a>, which made up close to half of the purchase price!), we were able to do just that! It is officially ours!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFjdrZU8WwF6xHTn_VeQVfkvAb9VMe-lZfy9ZBGM3aL6JQle5rtMlx9eGurQsXsaAVM5lrXRVegndpZe-RXe5g8juqxMMp-sbytIl-yveLR_XWe0cJvJlP1hBSxYtE873kd55mpIK0b9pV/s1600/IMG_8911.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFjdrZU8WwF6xHTn_VeQVfkvAb9VMe-lZfy9ZBGM3aL6JQle5rtMlx9eGurQsXsaAVM5lrXRVegndpZe-RXe5g8juqxMMp-sbytIl-yveLR_XWe0cJvJlP1hBSxYtE873kd55mpIK0b9pV/s320/IMG_8911.jpg" width="320" /></a></div>
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<span style="font-size: x-small;">On the edge of where the property starts :)</span></div>
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If you look closely, you'll see that what Lucy and I are holding is a set of blueprints. Blueprints for our amazing new addition! Bedrooms for Lucy and us, a bathroom for her, and laundry on the first floor so I don't have to leave Lucy alone to get her washing done throughout the week.</div>
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We contacted some friends of the family to talk to them about the addition, and they recommended <a href="http://www.switchboard.com/business/cla-design-service-llc-saint-cloud-wi" target="_blank">CLA Design Service, LLC</a> for the blueprints, which was the first step we were going to need to build. We are nowhere near our fundraising goal, but we will need the blueprints eventually, so we contacted Jim Emmer at CLA Design to help us draw up our vision. </div>
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Jim came out to the house with Dan and Marcia Valle of <a href="https://www.facebook.com/pages/Valle-Construction/148852678491576" target="_blank">Valle Construction</a>, who we wanted to talk to about getting an estimate. Being the control freak that I am, I may or may not have handed Jim and Dan copies of a crudely-drawn-in-the-paint-program "blueprint" of what I was looking for. ;)</div>
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They checked out our existing house, checked out the property, took all the measurements needed, dealt with Bert tailing them annoyingly, and talked with me about my little drawing. As they left, Jim said he would have a preliminary blueprint for me to check out by the end of the week. Since that was in three days, I was surprised to see the blueprint arrive in the mail two days later! So exciting!</div>
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There was only a slight modification to what he originally sent me, so after I called him and we discussed it, he got the official prints right out. That's what you see in the picture! And in a heartwarming and humbling display of generosity and kindness, Jim has donated the blueprints to us! Now we need to figure out a general idea of what this is going to cost... I have a feeling my $90,000 guess isn't going to be too far off.</div>
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We will get there! We have ways for you to help, if you feel so called - there are <a href="https://www.facebook.com/events/1376208962608003/" target="_blank">Thirty-One bags</a> to buy, an <a href="https://www.facebook.com/media/set/?set=a.638663706152134.1073741825.144075798944263&type=1" target="_blank">auction for baby gift items</a>, a <a href="https://www.facebook.com/events/557434654315633/" target="_blank">Pink Zebra party</a>, Lucy magnets to buy (email bzahn84@charter.com for more info), you can place an order with <a href="https://www.etsy.com/shop/CoutureToCureSMA" target="_blank">Couture to Cure SMA</a> for hair clips, or you can <a href="http://www.gofundme.com/2jcic8" target="_blank">donate directly</a>. We are planning a local fundraiser at the Culvers locations in Fond du Lac on October 8th, and are mulling over ideas for a pool tournament. We will keep charging along, until we can make this a reality for Lucy. Please pray that we can meet our goal of breaking ground on this no later than the beginning of next summer. Lucy's safety is foremost in our mind, and shuffling her up and down the stairs multiple times a day isn't cutting it anymore. Thank you all so much, for your continued support and prayers!</div>
<br />Lucy's Mamahttp://www.blogger.com/profile/01276610711792112286noreply@blogger.com1tag:blogger.com,1999:blog-3128424260492554822.post-36227923737001730132013-08-20T07:41:00.000-07:002013-08-20T07:41:53.955-07:00Ways You Can Help!Hello all! We've had a few new fundraisers pop up, so I thought I'd put them all in one place for easy access :) This way, if you feel so inclined, you can choose which one best suits your needs!<br />
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First we have a <a href="https://www.facebook.com/events/1376208962608003/" target="_blank">Thirty-One bags party</a> going for Lucy. This runs until August 27, so if you're in the market, get your order in! They have totes, thermal bags, storage bags, organizing bags... if you need a bag, they have it! And you can personalize, too :) Plus, it's a mystery hostess party, so everyone who purchases has the chance to win the hostess spot, and be eligible for all the deals that brings your way!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzRin06O-hudjJSjJleMMNrdano1bAHNBNjVx6rYjLFwHj35MrY15Ek6y2e-nFOl_Hygk-jMLcwQnn5fEyumPkf88jYexwZ8VZsmebhdRtE40rzsyh319FmBVRG-UVN0_tyXL9Vs-qDkpY/s1600/tote.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzRin06O-hudjJSjJleMMNrdano1bAHNBNjVx6rYjLFwHj35MrY15Ek6y2e-nFOl_Hygk-jMLcwQnn5fEyumPkf88jYexwZ8VZsmebhdRtE40rzsyh319FmBVRG-UVN0_tyXL9Vs-qDkpY/s320/tote.jpg" width="304" /></a></div>
Then there is an <a href="https://www.facebook.com/media/set/?set=a.638663706152134.1073741825.144075798944263&type=1" target="_blank">auction for baby items from Mommie to Be</a>, and that closes August 25. Lots of cute gift ideas for whoever is expecting in your life!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1XwbDDRmGK523S5C_tg3P7EFeGhOM9Vpxomq8BSG4Yr_aJmrHYWxUWjVT2qp-Oke5jxDca61zLEkw2JKTJgYuHMOn7qlrYpjIatsimOV1TI3rszo1duHH7M9q4hKrLaqiBa1KBpQ0Ayyu/s1600/diaper+sundaes.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="246" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1XwbDDRmGK523S5C_tg3P7EFeGhOM9Vpxomq8BSG4Yr_aJmrHYWxUWjVT2qp-Oke5jxDca61zLEkw2JKTJgYuHMOn7qlrYpjIatsimOV1TI3rszo1duHH7M9q4hKrLaqiBa1KBpQ0Ayyu/s320/diaper+sundaes.jpg" width="320" /></a></div>
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We also have a party that just started for <a href="https://www.facebook.com/events/557434654315633/" target="_blank">Pink Zebra scented gifts</a>! I was reading through all of the scents and started drooling :) That party runs through September 2.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjW6UERXhpdMmYmynPfq3dHj9XZAPvVRD-bX7Tfnl4OublbevvKEDjAKMI6gscBoG6s_RN6F5UKa2AKhMh5Bvdbt8_zP7KepojUu4c7oMnNW9zcjgFrq2vme8OS5VbeKdU_fVQPFQQ2RPl9/s1600/pink+zebra.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="286" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjW6UERXhpdMmYmynPfq3dHj9XZAPvVRD-bX7Tfnl4OublbevvKEDjAKMI6gscBoG6s_RN6F5UKa2AKhMh5Bvdbt8_zP7KepojUu4c7oMnNW9zcjgFrq2vme8OS5VbeKdU_fVQPFQQ2RPl9/s320/pink+zebra.jpg" width="320" /></a></div>
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You can mark your calendars for October 8 - put away your dishes and let Culver's get you dinner! There will be a fundraiser for Lucy at all three Culver's locations that night, from 5pm-7pm. I will let you know more of the details the closer it gets.<br />
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We have a date set for the next Links for Lucy event, at The Golf Club at Camelot in Lomira, so put down June 7, and we'll see you there! We are hoping that this event will be the last one, after fundraising over the winter and spring, and that we will then have enough to either start the building outright, or enough to be able to take out a loan for the rest.<br />
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I also still have magnets available for $5 each, free shipping. You can email me at bzahn84@charter.net to place your order!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyn0Fh8_69-zh5Lwj6Gi0ALDZNuJvqXmIPgxafbn4VHHqycWj5IhF3zRZyZWJZgUY2NeEIC-_WA0N6IQSDdelwzDeXGNwmiyGtFz80hbT7ZZiQUSoQZEpDx058LQorrskUC8fR1_GSX05e/s1600/IMG_1949.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyn0Fh8_69-zh5Lwj6Gi0ALDZNuJvqXmIPgxafbn4VHHqycWj5IhF3zRZyZWJZgUY2NeEIC-_WA0N6IQSDdelwzDeXGNwmiyGtFz80hbT7ZZiQUSoQZEpDx058LQorrskUC8fR1_GSX05e/s320/IMG_1949.JPG" width="320" /></a></div>
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I think that's everything we have going right now. We are contemplating a pool tournament in February, and thinking about something for around the holidays - maybe if I have enough time, I will get to work on some of the fabulous craft ideas I've been pinning, and offer some of them for sale!</div>
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Thank you all so, so much for caring about Lucy. For reading the blog. For spreading the word about her, and for helping us change her little world. We took her to the last Monday music in the park last night, and the Whiskey River Band was playing. She LOVES their style of music! And one of the guitar players was kind enough to give a little shout-out to her and Mateo, dedicating a song to them! Of course when we left, she got to say goodbye to the front row; the people there always smile and wave and say goodbye to her, and she just beams at them. Thank you for helping to make her the happy little girl that she is :)</div>
<br />Lucy's Mamahttp://www.blogger.com/profile/01276610711792112286noreply@blogger.com0tag:blogger.com,1999:blog-3128424260492554822.post-20740590054942221282013-08-06T16:13:00.000-07:002013-08-06T16:15:56.960-07:00SMA Awareness Spreading!Hi everyone! I totally spaced and forgot to announce the beginning of SMA Awareness Month - it's this month, in case you hadn't already deduced that :)<br />
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I borrowed a fantastic idea from the smart-as-whips parents over at <a href="http://jadonshope.org/index.php?page=jadon-s-hope" target="_blank">Jadon's Hope Foundation</a>. What is more appealing to the mass population than sports? It's incredible, really, when you sit down and figure out how many SMA carriers are in the stadium at any given sporting event. Shocking, really. Jadon's Hope posted a great one about their local team, so I thought I would make some up for our teams. Please feel free to share, pin - do whatever you can to get the word out there and really make people think!<br />
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<span style="font-size: x-small;">Brewers at the bottom, because... well, you know.</span></div>
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We've been doing some fun things with Lucy, too - last weekend we took her to the park, to visit the petting zoo and take her first ride on a carousel!</div>
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<span style="font-size: x-small;">A flemish giant! So fluffeh!</span></div>
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<span style="font-size: x-small;">The carousel horses were chasing her :)</span></div>
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We also just got to meet up with another SMA family in Madison! The Tolsons had to come see Dr. Schroth with their daughter Holly, who is the same age as Lucy. Lucy was SO excited, and in a bubbly mood the whole way there, chatted at Holly for our visit, and then grinned all the way home!</div>
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And a little side by side comparison from the last time they got together:</div>
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Otherwise, we've just been hanging out; playing with toys, going on walks, running errands - the usual summer stuff. I think we're going to try to fit in a zoo trip yet this year, or maybe the museum, but otherwise we're taking it easy! Isn't that what summer is all about?</div>
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<br />Lucy's Mamahttp://www.blogger.com/profile/01276610711792112286noreply@blogger.com0tag:blogger.com,1999:blog-3128424260492554822.post-13589212057301956232013-07-15T20:41:00.002-07:002013-07-15T20:41:57.846-07:00I Pity the FoolWe love to take Lucy to the music in the park in our town. The talent varies, ranging from symphonic orchestras, to polka bands, to cover music. The crowd varies too, but a little less than the music - we are usually on the younger end of the spectrum :) We're considered regulars, I guess, and a lot of the crowd recognizes Lucy, and waves to her as we come and go.<br />
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On our way out last week, an elderly gentleman stopped us and asked if he could ask us a question. We're almost always game, and told him to shoot. He said, with a smile, "You just always seem so happy..." and trailed off. I assume the unspoken question was "Why?" or "How?" Because having a child with Lucy's challenges means that might be a difficult task, if not outright impossible.<br />
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(Note: I was not feeling insulted. At least I don't think I was. I'm sure he didn't intend it to sound the way it did. At least I don't think he did.)<br />
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Here's the thing: we don't dwell on what could have been, or what we had once hoped for. We focus on what is. And what is, is a little girl who does not deserve to have parents feeling sorry for themselves. We had our whole lives; childhoods full of softball and bike rides, camping and birthday parties. Teen years rife with troublemaking and first time experiences. We met each other, fell in love, got married. Had a kid. We've had all those years to live for ourselves, make our own memories. And now, our time is about Lucy. To make sure she can have her own happy memories. I'll be damned if I'm going to let self-pity rob her of that. You just have to make that decision - to be happy with what is. Truly happy. <br />
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I'm happy because Lucy is happy. Lucy is growing, and is silly, and can experience things in her own way. And when Lucy is not happy - which happens - I am like any mom with an unhappy kid. I'm probably disciplining her ;) It's life. To me, it's my life, it's the way it is, period. Regular. And to wish for anything different, or to lament the situation, is just inviting a miserable existence for not only me, but for my daughter. And Lucy does not deserve that. She deserves to have people marvel at how happy she is - how happy WE are.<br />
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<span style="font-size: x-small;">Lucy baking up a storm with Daddy - she's been in her room for two straight days now, because I am sick and she can't come out into any areas of the house where I've been, and I cannot be near her.</span></div>
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<span style="font-size: x-small;">Bedtime of day three - Daddy keeps her occupied well :) Is she bitter about being stuck in her room? Or mad that she missed music in the park tonight? Nope.</span></div>
<br />Lucy's Mamahttp://www.blogger.com/profile/01276610711792112286noreply@blogger.com0tag:blogger.com,1999:blog-3128424260492554822.post-89563360099220759002013-07-13T17:49:00.000-07:002013-07-13T17:49:21.308-07:00Lucy 4 year celebration!In years past, Lucy has been notorious for being sleepy/cranky/tantrum-y at her birthday party, because of a lack of sleep the night before. Whether that's because she's excited prior to the big day, or just a child's knack for knowing how to thwart her parent's best laid plans, I don't know, but I did know that I wanted this year to be enjoyable. Enjoyable for Lucy seems to be low-key and laid back, so we pared down the celebration and kept it quieter this year - and didn't mention the party to her beforehand ;)<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgj-J38fLh9knz_JQEAp_ppljm1uHGv35J248eYib7L_Dp4GcmztGKtlaatxDSdYqhjkkk3xnMR-uHicU4O3s2Kt8OjQDJdt2opuBONTQpxgDglr1OE14UiKMqVbJdkZsS2sEoDd2tH-STu/s1600/IMG_2041.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgj-J38fLh9knz_JQEAp_ppljm1uHGv35J248eYib7L_Dp4GcmztGKtlaatxDSdYqhjkkk3xnMR-uHicU4O3s2Kt8OjQDJdt2opuBONTQpxgDglr1OE14UiKMqVbJdkZsS2sEoDd2tH-STu/s320/IMG_2041.JPG" width="320" /></a></div>
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<span style="font-size: x-small;">Laid back. Low-key. Quiet. Dress by Mama, Lorax hair clip by <a href="https://www.facebook.com/KindKreations?fref=ts" target="_blank">Kind Kreations</a>.</span></div>
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<span style="font-size: x-small;">Lucy's friend Mateo came too!</span></div>
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Lucy's other love, besides her loyalty to Sesame Street, is Dr. Seuss. She doesn't care much for the movies, but she LOVES the books - particularly The Lorax and Horton Hears a Who. I bought The Lorax for her before she was born, and was attempting to read it to her when she was a week old, so I guess my plan worked! I decided that would be our theme this year. Surprisingly enough, for all of Dr. Seuss's sage wisdom and character appeal, there are scant few birthday decorations available, so I had to come up with some myself!<br />
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My love for Etsy and Pinterest really came in handy here. Fortunately, I found an <a href="http://www.quill.com/search/search.aspx?keywords=dr.+seuss&rurl=&dataqpg=1&PageType=2&SearchPageType=2" target="_blank">office supply site</a> online that provided cutout wall decor that would have taken me eons to draw myself (and they were then recognizable, score!), as well as cardstock book covers that I hole punched and strung with ribbon.<br />
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See the Truffula trees in the corner? Tissue paper and pool noodles - thanks Pinterest! And the centerpiece was all me :) I saw some marabou Truffula trees online, so I stocked up on various colors of marabou, wooden dowels, and craft paint, and added them to a great Who border that I got from the office site. My dad drilled out some holes and a divot for the border, I crammed them in and slapped some moss and paint on, and voila! I know, I know, Whos and Truffulas are not natural together, right? Not like a Lorax popping out of a tree, or an elephant hatching an egg. I don't think Lucy minded!</div>
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And then there was the cake - I was hoping for something that Lucy could easily see and appreciate from her vantage point. Printed on graphics were not going to cut it. I contacted a local baker, Josh from <a href="https://www.facebook.com/pages/Joshs-Cakes/339694329455921?fref=ts" target="_blank">Josh's Cakes</a>, to concoct something for Lucy based on cakes I had seen around the web. This is what he came up with - </div>
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<span style="font-size: x-small;">See any resemblance?</span></div>
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<span style="text-align: left;">Just spectacular, right? I was beyond elated when he sent me the pictures. I made up a few extra Truffula trees to add in, and we were all set! I was so excited to see what Lucy thought.</span></div>
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She loved it, and she loved being sung to. In the right, controlled, comfortable setting, she is a huge fan of being the center of attention :) Then it was cake time! We got a cake that we thought Lucy would be able to taste most of; one with raspberry filling and key lime cheesecake, along with regular white cake and a divine buttercream frosting. It tasted as good as it looked! I already have an idea in mind for next year :)</div>
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<span style="font-size: x-small;">More!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1gOAI9gciKQj5jxj5nJNg-CpB0jrQxC_xaTI99OySxYsxioks4hPCJwc-6BEqv1jCZ_JCqkYvOPmAgFX-33ReKkKxSoU680B77jGJoeIXlSJLGgRtqk5dBHGLxAkhTIqOrnN-3wD8_pYE/s1600/DSC_1005.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1gOAI9gciKQj5jxj5nJNg-CpB0jrQxC_xaTI99OySxYsxioks4hPCJwc-6BEqv1jCZ_JCqkYvOPmAgFX-33ReKkKxSoU680B77jGJoeIXlSJLGgRtqk5dBHGLxAkhTIqOrnN-3wD8_pYE/s320/DSC_1005.JPG" width="320" /></a></div>
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<span style="font-size: x-small;">Mateo liked his too :)</span></div>
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Then it was time for presents! Daddy got Lucy up for a little break off of her back, so she could check out the decorations close-up...</div>
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...and then we made our way over to the unwrapping corner. Lucy decided that she had had enough party, and was trying to go to sleep.</div>
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Once we got started, though, she perked up :)</div>
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<span style="font-size: x-small;">Had to sneak some Sesame Street in there anyway!</span></div>
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She was having fun, but had to throw some sassy eyerolls in after awhile.</div>
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We were getting to the end, and started opening some clothes that were decidedly too small for Lucy. She was amused at first, and then not so much.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5K0Kp4cqKafnf71XN_3jc3jrSHQm82wvX3ABScHo-s4ZHWl9z6wxH_3gCLfst-GIWh0uXtTSJetdjOmJ2N6GGUcNuSIXr4wqQQ1F5Va0jsNBk1o-r_CV2WYPVIJKu4p5nj3J-YvY5xlyw/s1600/DSC_0065.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5K0Kp4cqKafnf71XN_3jc3jrSHQm82wvX3ABScHo-s4ZHWl9z6wxH_3gCLfst-GIWh0uXtTSJetdjOmJ2N6GGUcNuSIXr4wqQQ1F5Va0jsNBk1o-r_CV2WYPVIJKu4p5nj3J-YvY5xlyw/s320/DSC_0065.JPG" width="320" /></a></div>
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<span style="font-size: x-small;">Seriously, Ma, what is this about?</span></div>
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We saved ours for last - Lucy has been more interested in dollies lately, and we've been scoping them out on our Target runs. They have an Our Generation line that is akin to the American Doll brand, and she seemed the most interested in those (they have blinking eyes!), so we chose one for Lucy.</div>
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<span style="font-size: x-small;">Not opening fast enough! Eyeroll!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizrItT3fU2AC8OpKSvPPcliAeAHUo_S3RPLDGv5Z67YhuUkEn_jb_yjiroi6dDpnoUZnLIdD16AiJjiJ7WAH46mEfGDM8lFuohyphenhypheniK-ew1JNn3zaz_eq3ODOBVjBBpdVKLN2N0d3azwM4Hp/s1600/DSC_0070.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizrItT3fU2AC8OpKSvPPcliAeAHUo_S3RPLDGv5Z67YhuUkEn_jb_yjiroi6dDpnoUZnLIdD16AiJjiJ7WAH46mEfGDM8lFuohyphenhypheniK-ew1JNn3zaz_eq3ODOBVjBBpdVKLN2N0d3azwM4Hp/s320/DSC_0070.JPG" width="320" /></a></div>
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<span style="font-size: x-small;">It's a dolly!</span></div>
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<span style="font-size: x-small;">Look everyone, a dolly!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUhxMudrpRG0w9BcEFPoaArY2i4QVTx2Rgtc8qF0xjaoDG6RPzRESjDAhGOSefDnmUjdg_nMHk-X2edvx4kThkafjZs2IKi9YVA7IFeY9plQCaYKoDeD64HRE6NpuSaAuINqjN9V_3cXK0/s1600/DSC_0073.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUhxMudrpRG0w9BcEFPoaArY2i4QVTx2Rgtc8qF0xjaoDG6RPzRESjDAhGOSefDnmUjdg_nMHk-X2edvx4kThkafjZs2IKi9YVA7IFeY9plQCaYKoDeD64HRE6NpuSaAuINqjN9V_3cXK0/s320/DSC_0073.JPG" width="320" /></a></div>
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<span style="font-size: x-small;">And she matches me, because Mama's a freak.</span></div>
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She stayed awake, she did not have a meltdown, and she liked her presents and decorations. Major success!</div>
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Lucy is 4. When she was initially diagnosed, we were given the same grim diagnosis that almost every SMA family receives - even the type 2 families, sometimes. But when we saw Dr. Schroth a couple of weeks later, we were discussing Lucy's sleep patterns (she would go to bed at 1-3am and wake up late,) and Dr. S said "Well, you'll have to take care of that before she starts school!" Just like that. Matter of fact. And that took care of it for me. My kid was going to beat SMA into the ground, and I was going to do whatever I had to to help her do it. So if I said I was surprised she made it to 4, I'd be lying. But do I feel blessed? Absolutely. And shouldn't every parent?</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO9AKbXQF-k2h4hviHSnxQiFa5YqlrEkDVZ5QM6ifgrrXADdhlaSRxpzbUeG6NGECMqJlMSmRVH4yQAOgTbPlJgG5AJUmiHXpfufVhmnwT9KhlaXOrf9U1jOBS8DIaz_aMkMQeeiXbukPE/s1600/IMG_2082.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO9AKbXQF-k2h4hviHSnxQiFa5YqlrEkDVZ5QM6ifgrrXADdhlaSRxpzbUeG6NGECMqJlMSmRVH4yQAOgTbPlJgG5AJUmiHXpfufVhmnwT9KhlaXOrf9U1jOBS8DIaz_aMkMQeeiXbukPE/s320/IMG_2082.JPG" width="320" /></a></div>
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<br />Lucy's Mamahttp://www.blogger.com/profile/01276610711792112286noreply@blogger.com1tag:blogger.com,1999:blog-3128424260492554822.post-62985791337712869742013-07-05T09:18:00.000-07:002013-07-05T09:18:33.246-07:00Independence Day!SMA means that Lucy doesn't have a lot of independence, but that didn't stop her from celebrating our country's! Last year, the weather was miserably hot - so much so that even healthy kids were staying home. This year, though, the weather was gorgeous, and we just had to take full advantage!<br />
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We started the day with a parade. What's the 4th of July without a parade? Lucy had a pretty good view of the band, the fire trucks, and the beauty queens.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5izhSMtnvyTUjT1Ry7bdR0aeWZ03RsamUEA32_lGNG4Ce3kO-qzBrGtoH5ehe7FOSHSsNshQ183jAOMai0ZHs8WysMwRbdHbaHIwa5ltjDMxTQkyDcRO4TFWMBmBDDKo8lqQzt951KTTg/s1600/IMG_2007.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5izhSMtnvyTUjT1Ry7bdR0aeWZ03RsamUEA32_lGNG4Ce3kO-qzBrGtoH5ehe7FOSHSsNshQ183jAOMai0ZHs8WysMwRbdHbaHIwa5ltjDMxTQkyDcRO4TFWMBmBDDKo8lqQzt951KTTg/s320/IMG_2007.JPG" width="320" /></a></div>
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<span style="font-size: x-small;">She had a crafty shirt this year, thanks to Pinterest ;)</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdV98Ji3JktFLPVi0yk-uJiZNcsqXr2E8x8tN5YxiGsQ1-VfpKg7y4hS09q3OvIYDE9AWK0Lzh4g-ZQWrfU2mTKUXBgGFuRIxlTWjymdsTan_dM47qvd8D0rwi1pttQhLDVLgay1uaj4vb/s1600/IMG_2017.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdV98Ji3JktFLPVi0yk-uJiZNcsqXr2E8x8tN5YxiGsQ1-VfpKg7y4hS09q3OvIYDE9AWK0Lzh4g-ZQWrfU2mTKUXBgGFuRIxlTWjymdsTan_dM47qvd8D0rwi1pttQhLDVLgay1uaj4vb/s320/IMG_2017.JPG" width="320" /></a></div>
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<span style="font-size: x-small;">The louder, the better!</span></div>
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We headed up the hill about halfway through, to hit up the brat fry before the crowds came. That parade lasted an hour and a half! Lucy was bored by the time we left, so it worked out. She chatted with Grandpa while we chowed down.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIjo_nAlETJ9JJKvliQiwSXJCWoZUKRFOEPEFE08iEtc6W-ZKzLkH0_l81zoUdBF5fjt8KULuUXFc4l_vJ_IdXr7RNmuMLsURUmScoIyPVeoC_qWwUlPM9ntfM57SY4cpkHDqe8ZBl0IHs/s1600/IMG_2023.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIjo_nAlETJ9JJKvliQiwSXJCWoZUKRFOEPEFE08iEtc6W-ZKzLkH0_l81zoUdBF5fjt8KULuUXFc4l_vJ_IdXr7RNmuMLsURUmScoIyPVeoC_qWwUlPM9ntfM57SY4cpkHDqe8ZBl0IHs/s320/IMG_2023.JPG" width="320" /></a></div>
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<span style="font-size: x-small;">Grandpa's mustache is fun :)</span></div>
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We did some quick shopping for fireworks, then headed home for Lucy to rest in the AC. Big evening coming up! She didn't nap, and didn't nap - and then, about an hour before we were going to leave, decided to fall asleep. Fortunately, she woke up in a pleasant mood, and we were off!</div>
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<span style="font-size: x-small;">Outfit change - guess where we're going!</span></div>
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Last year, we attempted the fireworks, but by the time we got to our spot, Lucy was pale, lethargic and sweaty, so we packed up and headed home. This year, there was a good breeze to keep the mosquitoes away, and temperatures were delightful. We set up shop early, ate dinner, and broke out the entertainment:</div>
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<span style="font-size: x-small;">Sparklers! Lucy is a pyro :)</span></div>
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Lucy LOVES sparklers, and the ones we got were veritable flamethrowers, so she was entranced. After each one burned out, she yelled for the next. Fortunately, we had a box of close to 100, so we had enough for our firebug, and to be able to share with the kids all around us. A little extra smoke to help keep those buggies away! ;)</div>
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<span style="font-size: x-small;">We burned holes in our blanket and the top of our cooler, but Lucy was happy.</span></div>
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The night went on; it got darker, Lucy got sleepier. At close to 10pm, the first fireworks shot up, and Lucy smiled. She grinned through all of the fireworks, and loved the loud, flashy ones (while the girl Lucy's age in front of us screamed and wailed.) We were close enough to see the ground show well this year, and Lucy loved it! She loved it all. Our town put on a wonderful show!</div>
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<span style="font-size: x-small;">They're starting!</span></div>
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Ground show</div>
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Lucy grinning in the dark :)</div>
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After they were done, we paid the price for being so close: sitting in traffic for close to 45 minutes, as everyone fled the park. Lucy was sleepy, but in a good mood, so we chatted about the fireworks and sang along with the radio to pass the time. When we finally got home, it was bedtime for Lucy!</div>
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All in all, an idyllic holiday - and we don't even have a single mosquito bite! Let's hope that next year the weather cooperates like it did this year!</div>
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<br />Lucy's Mamahttp://www.blogger.com/profile/01276610711792112286noreply@blogger.com0tag:blogger.com,1999:blog-3128424260492554822.post-1747036671873956672013-06-28T07:56:00.000-07:002013-06-28T07:56:09.823-07:00Links for Lucy!Whew! What a wonderfully successful event our (possibly first annual?) Links for Lucy golf outing and dinner was! We actually got there on time, and so Lucy was able to greet people in the clubhouse before they headed out.<br />
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<span style="font-size: x-small;">Sawyer wasn't golfing, but she said hi to him anyway.</span></div>
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Everyone arrived early to check in and get their drinks (this is Wisconsin, after all.)<br />
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<span style="font-size: x-small;">Cheers, Daddy!</span></div>
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Once everyone checked in, they were ready to head out!</div>
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<span style="font-size: x-small;">Good luck Daddy!</span></div>
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The weather held, and I really think the overcast skies and breeze on the course helped keep our golfers from melting completely. They golfed a full 18 holes on the beautiful course at The Golf Club at Camelot. Just as the golfers were starting, some of Lucy's friends arrived, so we got to chat for a bit!<br />
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<span style="font-size: x-small;">Jerika, Mateo, and Lucy just chillin'.</span></div>
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Then we had to head inside to set up the silent auction and other prizes to be had :)<br />
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<span style="font-size: x-small;">Lucy, holding down the fort.</span></div>
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<span style="font-size: x-small;">Lots of goodies!</span></div>
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<span style="font-size: x-small;">A very cool cigar box guitar, handmade by the talented Jamie Bark.</span></div>
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By the time we finally managed to fit everything on the tables, our first golfers were starting to trickle in, and we had a few more of Lucy's friends who had joined us - they came from near, and as far away as 4 1/2 hours!</div>
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<span style="font-size: x-small;">Partying outside - not everyone is a polar bear like Lucy, and the building was heavily air conditioned :)</span></div>
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<span style="font-size: x-small;">The lovely Leah :)</span></div>
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<span style="font-size: x-small;">After getting a sugar packet rush, wheelchair races started!</span></div>
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The last golfers arrived, and the charming and talented Tyler started talking up the prizes - I don't think a single person escaped his spiel! </div>
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<span style="font-size: x-small;">Bidding on something himself, because he's just that great a guy.</span></div>
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Then Lucy's grandpa Greg led with a wonderful prayer, and we all got to chow down - those golfers looked pretty hungry at that point, so we thought it best not to deprive them :) </div>
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After dinner, Noah got on the mic to thank everyone for everything that was done to put this event together. It all seemed to come together so seamlessly to us, but that was because of the generosity and hard work of so many! He got to give away the prizes and silent auction items as well, and kept everyone laughing the whole time :)</div>
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The night ended at the perfect time for Lucy - even without golfing 18, it was a long day for her, and she was ready for the comfort of home.</div>
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<span style="font-size: x-small;">Lucy's "done" face - at least Gabbie is smiling!</span></div>
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<span style="font-size: x-small;">Ahh... bipap.</span></div>
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At the end of the day, my cheeks hurt from all the smiling I had done. The feeling of the whole event was one of family, camaraderie, and warmth - every person there wanted to help Lucy, and that was an incredible feeling. We even had a woman come into our building after she was done golfing, who had seen the signs for the event and wanted to donate to Lucy! The whole thing was just incredible. And when everything was said and done, with all the golfers and dinners, silent auction and prizes, and other donations - and an anticipated donation from the West Fond du Lac chapter of Thrivent Financial for Lutherans of $750, after we submit them our total - we came in at a little over $8,000! More than I ever imagined we would receive. And it also came with suggestions of doing the event again next year, which we are game for! There are many things that a child with SMA needs, especially as they get older, and you realize that for your child, SMA is not a sprint, it's a marathon. We are so extremely grateful for the way our community has opened their hearts to Lucy.</div>
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Thank you to the huge group of people and businesses who made this happen! To Lucy's Grandma Lauri for organizing, Grandpa Greg and Grandpa Jim for helping to get donations and baskets, and to our hole sponsors:</div>
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<a href="http://www.tecre.com/" target="_blank">Tecre Co., Inc.</a></div>
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<a href="http://www.coleoilandpropane.com/" target="_blank">Cole Oil & Propane</a></div>
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Caroline Lamont of Stage Me to Sell</div>
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<a href="http://www.culvers.com/restaurants/fond-du-lac-johnson/" target="_blank">Rick and Pat Miller of Culvers</a></div>
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<a href="http://www.smithandhatch.com/" target="_blank">Smith and Hatch Insurance Agency</a></div>
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Andy Bauer's Dumpster Service</div>
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<a href="https://www.facebook.com/KhalesKrusade?fref=ts" target="_blank">Khale's Krusade</a>/Dr. Peter and Pamela Timmermans</div>
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Anonymous</div>
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Paul and Laurie Krasin</div>
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Jeff and Cheryl Kuntz</div>
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A big thank you to all the people and business who donated prizes and silent auction items:</div>
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<a href="http://www.gillysfrozencustard.com/" target="_blank">Gilles</a> - I realize it's spelled differently on the website, but if you'll look at the picture on the left, that is the location in our town; spelled "Gilles" :)</div>
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<a href="http://bublitzsrestaurant.com/" target="_blank">Bublitz's Restaurant</a></div>
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<a href="http://www.fireworkscityonline.com/" target="_blank">Fireworks City</a></div>
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<a href="https://www.facebook.com/pages/Olde-Towne-Beverage-Pizza/115268791832283?fref=ts" target="_blank">Olde Towne Beverage and Pizza</a></div>
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the Packers</div>
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Jacobson Farmers Supply</div>
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Jamie Bark</div>
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Lucy Zahn</div>
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Greg and Lauri Betz</div>
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Jim and Jeanne Zahn</div>
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Gene and Irene Miller</div>
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Matthew and Colleen Zahn</div>
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Don and Carol Huck</div>
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Juddy and Brooke Herwig</div>
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Beth Cornwell</div>
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Trisha Branson</div>
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Bette Vollert</div>
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Merry Damrow</div>
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Joan Buerger</div>
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Rendermans</div>
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Kate Vogedes</div>
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If anyone was left off the list, I'm sorry - our recordkeeping will be improved next year, I promise :) Know that we are grateful for your contribution as well!</div>
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Everyone was amazed at the bounty on the tables :) Thank you to Tyler for running that business - he did an extraordinary job, and we hope to retain his services next year! And heartfelt thanks to all of the attendees and donors. It was amazing to see the people there, people who set aside that day to help Lucy. The generosity and love was incredible to feel, and we won't forget it.</div>
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Now, onto the next fundraiser, and making more strides toward our home addition!</div>
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<br />Lucy's Mamahttp://www.blogger.com/profile/01276610711792112286noreply@blogger.com1tag:blogger.com,1999:blog-3128424260492554822.post-1672614905653829202013-06-14T18:07:00.001-07:002013-06-14T18:07:23.189-07:00Lucy checkup update!We had a follow-up appointment in Madison at the American Families Children's Hospital for Lucy today, to have another ultrasound on the bulge in her stomach, and to talk with Dr. Nichol about the results. The ultrasound was super early for Lucy (as in 9:50am), so she was less than thrilled about getting probed.<br />
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Dr. Nichol then came in and checked Lucy out. We haven't seen him since he did Lucy's g-tube/nissen when she was 5 months old, and he was shocked at how tall she was :) Really, when we tell people her age, everyone is. Anyway, he felt around on her tummy, and said that the lump was for sure an ovary. He discussed the results with the radiologist, and there is nothing abnormal about it. He also explained the reason that it is more pronounced when Lucy is trying to relieve herself - her insides are contracting. If someone would have just explained that to me in the beginning, I would have been more inclined to believe it was actually Lucy's innards I was feeling, and not a giant blockage! But now we know, so that's good. And everything is okay, which is even better.<br />
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I got a wild hair when we got back, and decided to rip apart and wash down a playhouse that was gifted to Lucy by a very special friend a couple of years ago; Brianna also has SMA, and was very generous in giving Lucy the playhouse that she had grown out of. Since it's so hard for me to get Lucy in our backyard by myself during the day, and our deck isn't particularly structurally sound enough to have such a large and heavy toy on it, we haven't gotten much use of it, and that is a shame, since it's perfect for Lucy! I've been inspired by Pinterest, and decided to give it a makeover so that when Lucy gets her new doll for her birthday, they will have a place to play. We are going to bring it indoors, so she can play with it in the summer when it's too hot to go out, and in the winter, when we are on lockdown. I may be more excited than she is!<br />
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Hopefully by the end of the weekend, I will have some "after" pictures to show you!<br />
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We are coming into the home stretch before our <a href="https://www.facebook.com/events/129471653916401/?fref=ts" target="_blank">Links for Lucy</a> golf outing and dinner. Attendance is looking minimal, but every dollar helps, and we are so grateful for the donations, the hole sponsors, and for those who will be joining us at the event. We are very blessed to have some extra special people in our lives! You can still register to join us, either for golf and dinner, or just dinner - email me at bzahn84@charter.net.Lucy's Mamahttp://www.blogger.com/profile/01276610711792112286noreply@blogger.com0tag:blogger.com,1999:blog-3128424260492554822.post-58804780884698395482013-06-11T14:39:00.000-07:002013-06-11T14:39:52.013-07:00Summertime Fun!Summer is finally, fully here! And we have been celebrating with lots of fun outings - some of them so fun, I have forgotten to take pictures! Anyone who knows me is so shocked by that statement, I hope you are sitting down ;)<br />
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We started with a visit to a friend's farm, to see the cows and ducks. Lucy was fortunate enough to get a private tour, so she could get up close and personal with the savage beasts.<br />
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<span style="font-size: x-small;">This cow. Is trying. To eat me.</span></div>
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And she got to watch some profession duck herders corral the flock.</div>
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We tried to sneak closer, but Lucy's duck-murdering-machine (aka her stroller) kept them on the move.</div>
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We didn't let a few sprinkles, some breezy weather, and a missing Daddy stop us from checking out the Memorial Day parade. Thank you to all of our servicemen and women.</div>
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Of course, Lucy's favorite parts were the noisy bands and the blaring sirens.</div>
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<span style="font-size: x-small;">They're comin' ta git me!</span></div>
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We also hit up the June Dairy Days festival, which had its very own petting zoo full of baby animals yelling for their parents. Lucy got all kinds of little creatures brought to her, including a baby goat, fluffy chicks, the teeniest, softest baby bunny I had ever seen (seriously, its eyes weren't even open yet!), llamas, and on the way out we hit up the baby calf, which was covered with children and frozen in fear earlier. (Disclaimer: not sure if calf was frozen with fear or lounging in the shade, but I initially didn't even realize it was there, there were that many children piled on top of it.) Noah got Lucy up out of her stroller and crouched down with her, since the calf wasn't coming to us, and I helped her pet. It was her favorite, as indicated by her huge grin! No pictures; this was a busy, crowded event, and I was on high alert for a sticky, dairy-covered kid running into Lucy's stroller.</div>
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We had cousins visit from Georgia, and the last day of school party at the park. We got a chance to take Lucy to her classroom one more time, and then I was able to walk her to the park to meet up with her class and one other for a play afternoon. She got to take turns on the slide and swing, which she thoroughly enjoyed, and meet a cluster of "big girls" (FIVE year olds, look out!) Everyone was so friendly and thoughtful, and it really was nice to see Lucy be included and loved by kids her age. Again, no pictures - if you can figure out how to snap a shot while you're sliding 33lbs of unassisted weight down a slide, you let me know.</div>
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We also got to meet up with some of our SMA family at Gilles! The <a href="http://jadonshope.wordpress.com/2013/06/10/long-distance-doctors-appointment/" target="_blank">Burks family</a> drives all the way from Kansas to see Lucy's famous, fantastic pulmonologist in Madison, so we coerced them, with promises of frozen custard, into tacking on some extra drive time to come see Lucy and Mateo. The kids hung out and the parents got to catch up and compare notes. It's always so nice to see some of the clan :)</div>
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<span style="font-size: x-small;">Custard!</span></div>
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<span style="font-size: x-small;">The aforementioned clan.</span></div>
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<span style="font-size: x-small;">After it was all over - she got a lot of fresh air that afternoon!</span></div>
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And we got to hit up the famous Walleye Weekend on Sunday, to see my favorite cover band and yours - <a href="https://www.facebook.com/thepresidentsrock?directed_target_id=0" target="_blank">The Presidents</a>. As I heard it put so aptly on the radio, they're not just music; they're the whole show. And Lucy even got a shout-out, which led to a woman approaching us and offering to put a donation canister for Lucy out in her establishment! We left, feeling that our socks had been thoroughly rocked off, and that there are lots of good people in the world (after having one of our canisters stolen out of a restaurant a few weeks ago.)</div>
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Other than that, it's been a pretty average, wonderful start to the season; lots of walks, running errands, going out for dinner at random odd times of the day to avoid crowds... all of which is so much more enjoyable when you can do it as a family! I've been trying to get Lucy out of the house as much as I can on my own, which is a bit tricky now that she has a bigger stroller, we make sure to have all of her machines at the ready, and she herself is longer, heavier, and a bit more fragile. Yesterday we went out and cut peonies in our front yard - simple, right? Actually, it wasn't too terrible - just 4 trips in and out of the house to get her set up :) We have yet to put a ramp on our porch, so things (Lucy included), essential things, must be brought out in several trips. But I got it done, and Lucy got peonies for her room - they smell lovely!</div>
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<span style="font-size: x-small;">Slapping the ants out :)</span></div>
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<span style="font-size: x-small;">Sneaky little Bert with his photobomb.</span></div>
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Next up, as in starting tomorrow, is the <a href="https://www.facebook.com/pages/Lucys-Hope-for-a-Cure/191714740858263?fref=ts" target="_blank">Lucy's Hope for a Cure</a> rummage sale, put on by the ever wonderful Marjorie and crew. We are so blessed, and so grateful, to have a friend as tirelessly devoted to our cause as Marjorie is. Her whole family is the bees knees! And we would love to see you at the rummage sale, which runs from Wednesday through Friday - get the details <a href="https://www.facebook.com/events/162205710614769/?fref=ts" target="_blank">here</a>! Half of the proceeds will go to the <a href="http://thegsf.org/home" target="_blank">Gwendolyn Strong Foundation</a>, and half will go to Lucy's <a href="http://www.gofundme.com/2jcic8" target="_blank">addition fund</a>. Thank you to all who have donated, both items and time, to make this possible!</div>
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We are also counting down the days to our <a href="https://www.facebook.com/events/129471653916401/?fref=ts" target="_blank">Links for Lucy</a> golf event. If you haven't registered to golf, or if you want to just come for the dinner and fun in the evening, there is still time! Message me at bzahn84@charter.net for your registration forms. There are still lots of slots open, and we are hoping to fill as many as possible for Lucy!</div>
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Toss in birthday planning that I was silly enough to leave until the month before the day, and I have a full plate! We're keeping it low-key this year, because Miss Sassypants just gets herself all worked up the night before, doesn't sleep, and is then Miss Crabbypants the day of. Hoping that a smaller party (and not telling her about it the day before!) will curb some of that. I couldn't resist, though, and showed Lucy some of her birthday dress fabric:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbMB2YZjEmd3JPHqfy1PhaL15RZST426hcjVB5GKXTGc9ckL2v3JzS3AORWigpKDFENp4wD2GoG8ofwRDvDVU5rqWJKQQrsyYnmPOqw6oLpetxJIMnY3r06mjbTSNMG666DX1uagHGNFC0/s1600/IMG_1940.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbMB2YZjEmd3JPHqfy1PhaL15RZST426hcjVB5GKXTGc9ckL2v3JzS3AORWigpKDFENp4wD2GoG8ofwRDvDVU5rqWJKQQrsyYnmPOqw6oLpetxJIMnY3r06mjbTSNMG666DX1uagHGNFC0/s320/IMG_1940.jpg" width="240" /></a></div>
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<span style="font-size: x-small;">I think she likes it.</span></div>
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That should have us all caught up! I'm hoping to be able to update with lots of fun things over the summer. After Lucy's events and birthday, we're looking forward to the 5th annual Par 4 Peyton, put on by <a href="http://www.unite4peyton.com/" target="_blank">Unite 4 Peyton</a> - always a fun event! Stay tuned :)</div>
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Lucy's Mamahttp://www.blogger.com/profile/01276610711792112286noreply@blogger.com0tag:blogger.com,1999:blog-3128424260492554822.post-24093439795461029072013-05-28T20:14:00.000-07:002013-05-28T20:14:15.871-07:00Teach Your ChildrenNow. Teach them now; while they're still young, still without bias or social grace. Teach them that not every child in the world is like them - and not only in mundane, expected ways like hair color or glasses - but vital, noticeable, drastic ways. Ways that include feeding tubes and braces and alarms and machines. Ways that mean not being able to move at all - or not being able to control spastic movement. Ways that mean not being able to make a sound - or maybe making loud, nonverbal noises.<br />
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Now. Teach them while you're in your living room. Get a book from the library. Find a way to incorporate it into their play. Don't wait for the out-in-public starefest (remember the aforementioned lack of social grace?) I know kids stare at all kinds of things, and I personally don't mind anyone coming up to us and asking about Lucy, and really much prefer it to the silent, questioning stare, but there are people who do not wish themselves or their children to be a learning experience, no matter how well-intentioned. It's well within your ability to head it off and start discussing it now.<br />
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Now. Teach them now. Teach them before they run into my mostly sweet, mostly outgoing (she is only almost 4, there is still quite a bit of sass and caution there!) Lucy, and hide from her. I understand that the machines and stroller - and DIFFERENCE - is all very big and very intimidating to a small child, but a parent talking to them about it, introducing the possibility into their forming mind, can make all the difference. To them, and to Lucy. <br />
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I don't know if Lucy is hurt by it yet, or even realizes why some children are so scared. Why they won't talk to her, refusing to acknowledge her smile or yell. But I can tell you, I do realize. And to be frank, I'm tired of it. I understand they are children, and you can't make them act a certain way, or accept something - BELIEVE me, I understand! - but you have the power to make it a possibility. It's possible that instead of hiding behind you, they will step forward. Maybe instead of tugging on your arm to get away from Lucy, they will return the smile, as they stare at her. Maybe your teaching them will make a difference. To both of them.Lucy's Mamahttp://www.blogger.com/profile/01276610711792112286noreply@blogger.com0