June 4, 2019
Decent day today. The grumps are definitely coming out before she naps. It's likely because she's just so tired... what toddler would be happy with only sleeping for 4 hours (at best) at a time? ... for months.
No concerns with vitals. I believe the plan is for her 7th round of chemo to start next Monday. Her next MRI will be after that round completes. Can't help but be nervous for that.
OT stopped by today and did an animal puzzle with her. She was mildly cooperative. She clearly knew what she was supposed to do, and the therapist commented that her wrist rotation is really great (of course only in her right arm). She still mostly ignores her left arm, but now if you put something in her hand and ask her to squeeze it, she will, and then she'll smile. And she's bringing her hands together to hold and clap regularly throughout the day now.
Speech therapy appears to have given up on getting her to swallow. They say she's doing "very poorly with it" and for the time being they are focusing on communication. I'm not happy about that... but I understand there is a safety concern with attempting to force swallowing with stuff going into her lungs. I guess they are 'looking into it'. (And sign language is being considered for the communicating part.) So because she really doesn't swallow... she's spitting a lot more. She can't spit like a normal person, but you can see her kind of pucker her lips together and then push out saliva. Now she will also point to her mouth, and if you ask if she needs a wipe, she will nod yes. Then she will reach out for you to hand it to her because she can wipe her own mouth thankyouverymuch.
Oh, and she picked her nose for the first time since November. I guess that's technically a milestone. And she's getting a little slap-happy when the nurses need to do stuff to her. So she'll slap the nurses arm, but then pet it because she knows it's wrong <3 When she was at home, she was just learning how to "be gentle" to our kitties. She'd slap them because that's what toddlers do, but then we'd remind her we don't hit, we pet kitties. So she seemed to remember that out of nowhere.
Reed and I took our Trach 3 class today and did fine. It's just on a doll... so it's pretty much nothing like doing it for real. But I guess it was useful. It was to just go over the details of removing/inserting a trach, with all the sanitation, order, and timing considerations. So I guess going forward, they want us both present for all scheduled trach changes. I got several follow-up calls from home nursing agencies today, so I assume a schedule of sorts got in their hands. Nothing yet, but all three said they're looking into options. First movement in that area in well over a month.
Oh, and after reading recommendations, we brought a special surprise to the hospital (in pic!) She hasn't seen Donkey yet, but PT plans on giving it a try tomorrow! It could go really well or really poorly (given her demeanor lately... I'm assuming she'll hate it). But who knows! Maybe she'll love seeing her BFF again and enjoy some gentle bouncing to strengthen those chunky monkey legs.
So... maybe we'll have a fun Donkey video tomorrow?? Video in comments is SQUIRMY BUG. Unsure whether she's trying to readjust herself or she's itchy (or something else). Not getting very far with asking questions or making assumptions.
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Julia's *only* pages: Website: juliaadamscancerfund.org Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe: gofundme.com/juliasfightagainstcancer
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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