Happy Birthday, Lucy!

Whew!  *puff puff*  That's me, blowing the dust off.

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.

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.

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.

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 may be, they can predict what will probably be, but they can't tell you what will 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.

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.

The Amazing Momford's Magic Act

Did 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.

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.

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?"

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.

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.  

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.

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.)

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 ;)

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.

Pointed Praying

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

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

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.

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.

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.

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...

...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.

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.

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.

"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

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 :)

After bath ritual is watching Frozen - Lucy chose Anna for the 

front, Elsa on the back :)

Lives Matter - on the matter of living

"There is nothing like staying at home for real comfort."  - Jane Austen

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.

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. 

Lucy is not one of those kids.

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.  

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.

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.

So far, she has chosen mostly this.

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.

Checking out Christmas lights in the living room at 3am on 

a sleepless night - this was quite an adventure for Lucy! She 

liked it for the first 10 minutes, and then wanted to go back 

to her room... so we did :)

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.

Currently that means we're full of Frozen stuff ;)

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 ;)

Pushing - we took her out at the end of November to get a tree.  Success!

So the next week, we went to the Christmas parade (above).  It was mostly enjoyed.

So after that, we hung around the house.  Cues come from Lucy.

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.

“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

Yes, 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.

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.

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!

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.

And here they are!

The bathroom mirror cost a whopping $6, and is a plastic made

to look like wood, so spray paint to the rescue.  Seriously, people,

check your local thrift stores!  Or don't; more for me then ;)

New tub!

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 :)

All of the cut glass pieces were thrifted; the aqua 

glass candleholder was 90% off at Hobby Lobby.  The 

bowl and pitcher set was also thrifted, and then spray painted,

as was the frame.  The print in the frame was custom sized by a

seller on Etsy, and I had a coupon for a free print from Shutterfly

in just the size I needed!  Score!

I hit a major jackpot and found most of these hand embroidered vintage

linens in a pile, for $1 each.  The lady behind me at the checkout agreed :)

I cut most in half, and sewed them to a sheer curtain I had thrifted as well.  This

project was a PAIN, but I love the way it turned out!  Thanks Pinterest, for the idea!

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 Modern Marble, 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.

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!)  Silica Plumbing, 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!

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 ;)

Decorated for Christmas, obviously.  Doll and kitchen and dress-up central!

Frames, mirror, sconces, yellow doll cabinet - all from resale shops,

refurbished and painted by yours truly.  The vanity belonged to 

Lucy's great great grandmother :)

The cabinets underneath hide medical supplies, so that 

the books and trinkets can take center stage - as 

they should in a little girl's room.

See? 

And you'd better believe that closet is crammed full ;)

Doll furniture, all thrifted and painted by me.  Who 

has the funds to pay for American Girl accessories?  

A little table for our side (thrifted and painted!), 

and Lucy's equipment in the custom shelving

on the other side, hung so that we could put her current equipment cart,

which we love so much, directly under the shelving unit. 

Slapped a coat of paint on it and it fit right in!

  The Cinderella painting is from her 5th birthday - she

likes the old-school Disney movies best :)

Storage under her bed, too - platform bed custom built, courtesy of 

Lucy's Grandpa Greg. And that bed crown?  Thrifted, baby!

Storage for days...

...with a view!

The window seat is so great!  Bert loves it too :)

Since Lucy's inside so often, it's wonderful

for her to have a nice big view of the outside world - especially the work

done by Backyard Landscapes!  More on that later :)

It filled up quickly :)

And was fun to decorate for Christmas!

It's Bert's favorite perch :) Especially after Lucy's Grandma Lauri

made a bench cushion!

That silver pumpkin was a jack-o-lantern, found by

Lucy's OT.  Some papier mache and silver paint, and

it's Cinderella's carriage, post-ball.

Cinderella lamp?  A dollar, at a rummage sale.  The doily was

$1.50.  I think you can see the trend that's developing. 

Shop second-hand!

It becomes an addiction after awhile - seeing something

and figuring out how you can use it for something else.

Everything here was painted, and found at the thrift shop.

Lucy's doll closet looks like mine!

This I bought on eBay, but it was too perfect to pass up!

MORE OUTLETS!

Any parent of a medically fragile kid can appreciate

how exciting this is.

Obviously, Lucy is thrilled with her new digs.  There is an abundance of things to look at, and plenty of room to play.

She's a very good mama...

...a silly beauty queen (the first picture here is of

her laughing about the lid on the glass compote

slamming up and down)...

...and she likes to keep her doll friends dressed

in the latest fashions :)

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?

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!

I recommend doing your painting *before* screens and 

carpets are installed... this probably took half a day longer

than it needed to.  But it's so much brighter!  The blue

ceiling was a must :)

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 ;)

Choices, choices!

Priming is hugely unfun.

At least our paint from Luedtke Lumber went on smooth and vibrant!

Date night :)  We realized when painting that night, that it was the

farthest we've ever been away from Lucy, both at the same time - she was 

upstairs in her old room, sleeping, and we had her monitor :)

Stripes on the ceiling.  I've likened them to having a baby; you end up 

with something really cute and fun, but the pain and anguish of getting there

makes you want to wait awhile before you try it again ;)  Thanks to

Lucy's Grandpa Jim and Grandma Jeanne for helping with those!

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.

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 Backyard Waterscapes 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!  

Sorry, not many pictures of the process - I 

didn't want DuWayne to feel like we were constantly

spying on him out of Lucy's gigantic window :)

Naturally, Lucy LOVED it!  She can hear the water

burbling from her side window :)

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.

Lots of oohing and ahhing!  DuWayne thought of everything, and it turned out absolutely beautiful :)

We were a bit confused as to why the cement wasn't poured up to

the bottom of the ramp, as was DuWayne,

 but we hope to have that rectified over the summer.

Thanks DuWayne and Katie! 

And thanks to Make a Wish, and our Wish granters,

Judy and Linda!

Naturally, Lucy needed a special Wish reveal outfit :)

Right in front of Lucy's window, where she can watch 

them from her bed!

Which she does :)

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.

I love Christmas, so we got into that not too long after we were all moved into Lucy's suite :)

Lucy gets to test the Christmas lights every year with her switch :)

                         

We dressed up Bert for Christmas too :)  He 

loves dog clothes!

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!

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 :) 

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 :)

Immobility doesn't mean she can't give hugs :)

Lucy got to dump the water on Daddy for the ALS

ice bucket challenge!

Giving Daddy coughs after hers were done :)

We had a new room photo shoot when we moved in :)

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!

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

Marjorie Trew-Munson and Devin Munson, and their entire family

Merry Damrow

The Lexx Howell Foundation for SMA, who made up the large difference we needed to make the initial purchase of the additional property

Marshall's Miles

Unite 4 Peyton

Tecre Co, Inc., for donating not only funds but materials like the awesome magnets that we sold

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 :)

Thank yous are in order for our building team, as well.  We were blessed to have the ability to use Valle Construction 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!  

Luedtke Lumber 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 :)

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!

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.

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!

Fink Electric

Fondy Heating and Air Conditioning

City Wide Insulation

Hechimovich Masonry

Town and Country Underground

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.

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.

Thank you will never be enough, but words are all we have.  God bless you all.