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
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!
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.
1 comments:
Congratulations on the new edition! It's beautiful and the decor is perfect! Great job!
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