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April 17, 2019

Julia had her MRI at 3:00 today, no results yet. The scan went fine; it was just over an hour. Anesthesia used to really knock her out - she'd be out for the whole rest of the day, easily. This time she was swatting the nurses away as they wheeled her back into the room!! She's OVER this whole sedation thing =) We expect at least some results back tomorrow. ‍‍‍‍‍‍ ‍‍

Vitals have been fine. Only one barf today, and it was during trach care. She just seems to have a super-sensitive gag reflex, so I don't think they really count those instances as throwing up. As far as talking with the trach, I guess they give her some time with the cuff down to see what happens. They said many kids don't need a speaking valve - they can just learn to talk around what they have. If she doesn't continue to make more noises, they will use a scope and check for inflammation as the next step. But she's started making happy noises as well as angry noises, so she's doing in the right direction! ‍‍‍‍‍‍ ‍‍

Overall she's just been really happy today. Lots of smiles, lots of requests for hugs and cuddles. She LOVES having the iPad in front of her, so she can just change the channels on her own. And she's becoming and EXPERT scoocher - I'll have to get a video of her wiggling closer to Reed. We've also figured out the more tired she is, the closer to her face her stuffed animals get. She just kind of piles them on her face when she wants to go to sleep. Someone suggested maybe trying to block out the light, especially since she can't close her right eye all the way (on demand -- it does eventually close when she sleeps). Or she might possibly be trying to hide behind them so the nurses don't bother her. Either way, it's adorable. ‍‍‍‍‍‍ ‍‍

And I guess all the therapists are working together to make a schedule. They've given her a chunk of time during the day and at night where she isn't bothered for a few hours at a time, which is GREAT! Poor girl hasn't gotten any alone time in 5 months. People are always poking at her. They're also moving forward with lights out / Peppa off time at night, to try to encourage day-time hours. It's a work in progress, but at least it's starting. ‍‍‍‍‍‍ ‍‍

Oh, and I do have a question/thoughts for PTs or been-there-done-that parents (or anyone really). I don't think we're doing enough PT. I never thought we were doing enough PT. I've always been asking (through Reed, mostly) for more PT. It feels like it's always delayed or limited for one valid-sounding reason or another. I understand (now) that they wanted to get the critical nature of the cancer to ease up, before having her body focus strength elsewhere, which makes sense. But if we're past that stage... (and maybe we aren't?) I just feel like two 30-minute sessions out of 168 available hours in a week are just not enough. ‍‍‍‍‍‍ ‍‍

Before she was taken into the ER on Halloween, she was a normal, active, healthy toddler. She ran, she jumped, she climbed, she bounced... now she's been in a bed for 5 whole months. Actually, 5 months pretty much to the day. I don't know ANYTHING about recovering / rehabilitating a person (especially a toddler) in this situation -- major spine surgery / brain stem cancer / sedated for an extended period of time / actively on exhausting chemo.... are we doing enough? I feel like she should be with professionals like, 2x a day every day. We all (Reed, myself, and Charlene) do "stuff" when we're with her, but we're not experts. And none of us are comfortable moving her upper body yet. We can't even fully sit her up to help with her playing. EVERYTHING we can even begin to do is from a laying down position. ‍‍‍‍‍‍ ‍‍

I just... have this feeling we're doing her a disservice in NOT working with her enough. With all the scooching and wiggling she's trying to do... it's like a 2 year old is trying to rehabilitate herself, and the adults and experts are letting her down. She was physically normal 5 months ago =( . COULD she be out of this bed in a month if we did more? Versus being stuck in it for another year if we continue at this pace? ‍‍‍‍‍‍ ‍‍

Anyway - I'll be at the hospital during the day tomorrow (and have an opportunity to talk to the day-time staff), so I'm looking for some opinions: are we doing enough given her delicate situation, or should we be doing more. ‍‍‍‍‍‍ ‍‍

And CHOP is a fantastic hospital - perhaps they're just waiting on this MRI result to see where we stand with everything before really moving forward. I just hate seeing Julia trying SO HARD to move and play again, only to get frustrated because she's so limited=( ‍‍‍‍‍‍ ‍‍

[Possibly over-obsessing about the PT thing. In a slightly bummed mood. We set up a little toy car for Gabriel, which he loved... it just made me realize (again) how much Julia is missing out on. I want so badly for her to get to be a toddler =( She should be giggling right beside her brother. I just want to make sure everyone is doing everything possible to get her up on her feet again.] ‍‍‍‍‍‍ ‍‍

Video in comments of her bopping along to cartoons like she does all day long now. Her face at 3 seconds means SO MUCH to me <3 That's her "Where is it!?" face... even with her bald head and fat cheeks, that little mouth and hand movement are just like they were before all of this <3 <3 (Video cut short by snots)


. . . ********************************* ********** Official Links *********** (These are here because of scammers) *********************************

Julia's *only* pages: Website: Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe:

Julia's *only* fundraisers: T-shirts: Children's Book: Jewelry:

Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): || Coupon code: danaboyd

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

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