June 24, 2019
Julia has had a GREAT day! She's still snotty and a little barfy, but she's just been in a really good mood. She did 3 hours on her HME - not quite 6 hours, but she had lots of secretions and it was frustrating her. Also news - she starts chemo tomorrow. We didn't hear much as far as what was discussed, but I guess the plan is at least another few rounds of chemo. I'm glad we had a few days of happy baby before she gets sleepy again. And they weaned her BP medicine again, so now she only gets it at night, and will be off completely within the next week or so. So... another medicine on its way out of her system =)
OT came in today while Reed was at lunch, and they had her sitting up in the bed happily interacting. They held a Peppa out to the side (her left) and Julia ALMOST rolled all the way onto that side while lunging for it. Very close! When Reed got in, he suggested they switch to the highchair. She loooooved it. She played with everything and sat there for more than 1.5 hours - the longest yet. Then she got tired of holding her head up and went back into the bed... where she continued to play seated up for another 2 hours! She was coloring, and throwing things (happily), and putting shapes in buckets, and she even started stacking blocks again <3 Of course she mentally learned to stack blocks over a year ago, but to see her physically be able to do it again is really great.
Last night Reed was in here by himself and he heard a THUNK. He looked over and little goof goof was turned sideways in the bed, waving to him upside down, and the bed rail was DOWN! He doesn't know if she managed to drop it, or maybe it wasn't quite secured all the way (let's hope it's that). But she was VERY proud of herself! It was adorable. I mean.. not good, if she can drop the bed rails... but adorable.
Oh! And news I kept putting off because my updates have been so long: home accessibility improvements have started! This is such a huge step, and honestly the whole process is so overwhelming, I just don't really think about it. I've talked to so many contractors... the majority never even called back or gave an estimate. Several suggested selling the house would be easier than making it accessible / livable, given our budget considerations, handicap requirements, type of home (log cabin), and type of yard (steep hill).
But we found a contractor (well, contractor found us) who is local and has been following Julia for months. He came over and listened to our needs vs our "would be really great"s (for Julia... not like, a hot tub.... though I could really go for a hot tub). And he ran with it. In fact, I'm pretty sure I just stare at him with glazed eyes whenever he talks to me. He says he can tell I've never worked with a contractor before. I know most home owners probably have a pretty good vision before hiring someone - they have plans, and likes, and colors, and Pintrest boards... I don't have any of that. There's a whole lot of "whatever you think is best" going around.
So, he's giving us what we NEED - which is a way to get Julia inside. All entrances are a full level up from the driveway, and each entrance (front / back / garage) has considerations. And he's also giving us what "would be really great!" - which is a safe place for Julia to live for the foreseeable future. A place where she can be part of the family with her limited mobility and medical considerations. I like our house a lot, and I love that it's unique, but it's small. There's nowhere to setup her bed, and all her equipment, and give people room to work around her, and give her space and quiet when she needs it, and most importantly, keep Mr. Tornado's grabby hands away from her life-saving wires and tubes! So we're getting both of those things, and apparently he has a few surprises planned -- since he's renovating stuff 'anyway', I understand he's throwing in a few quality-of-life upgrades that have not even crossed our minds. I'm so excited to see what he does!
So, the project starts with the deck. We've decided to go up the front of the house with a wheelchair ramp, but that direction goes to a deck that is so unstable we don't even walk on it anymore. And every contractor (even those who didn't call us back) remarked that they had no idea how our deck passed inspection. Apparently it spans a huge gap with like... no supports. There are places that if you jump hard enough you'd 100% go straight through due to rot; and the railing posts were attached with like, 1-inch-rust screws. It was not good. I mean - big and pretty! Lots of potential. But old and worn, and not well-kept before we bought it... definitely not safe. But it's all getting replaced now. Composite (no splinters!), sturdy supports, safe railings, and a nice wheelchair ramp for our little love <3
Honestly, I'm so relieved that someone swooped in and took this over, while being so generous and understanding of our situation. Oh, and I guess all the owners were like, EMT/paramedics in the area, so it's the perfect team for Julia and her medical needs <3
The company is Trestle Bridge Property Services. And it looks like their Facebook page is brand new with pretty much just a fancy logo... but here it is!: https://www.facebook.com/trestlebridgepropertyservices/
I'll be sure to post progress pix along the way =) It's starting to feel real that she's coming home soon!
Video clip in comments of Julia's WONDERFUL playtime today. A few videos ending with Reed and Julia having a pretend tea party - a first for both Daddy and Julia! <3 <3 <3
YouTube: https://youtu.be/iVoPBt6JQGo . .
. ******** ~~ Julia Adams ~~ ******** ********** Official Links *********** (These are here because of scammers) ********************************
Julia's *only* pages: Website: juliaadamscancerfund.org Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe: gofundme.com/juliasfightagainstcancer
Julia's *only* fundraisers: T-shirts: https://bit.ly/2MQc0lF | https://tinyurl.com/y55lh988 Children's Book: https://amzn.to/2CTTN2S Jewelry: https://etsy.me/2E1mR8i
Car Magnet: https://tinyurl.com/y4nxr3lr
Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): www.naturallywellforlife.com || Coupon code: danaboyd
Chordoma Foundation: www.chordoma.org
If you're new and want to know what's going on, my first post about Julia was on October 31st. You can find them all on my Facebook page or Julia's website <3