June 5, 2019
OK, so Donkey was a big fail.
(Wanted to start there for those who just rush to watch the video!)
She was NOT happy! She shook her 'no' finger a lot, and protested, and cried. So... not the reaction we hoped for, but probably the reaction we expected. They will continue to try Donkey at PT to see if she warms up. Maybe we'll show her some videos of her bouncing to see if it helps her remember. Other than Donkey, she had a pretty decent PT session with the blocks. She did a great job wiping her nose and mouth, supporting her head, and throwing stuff to Reed =)
Chemo also started today, which was unexpected. For some reason I thought she was starting on Monday, but apparently her levels got back to normal more quickly than predicted, so they started her today. This is round 7 of 12. 12 is just an initial plan... since the cancer is so rare there isn't really a set protocol. So it's our start. Her next MRI will be once she recovers from this - so possibly as early as 2 weeks!
Vitals are decent. Lots and lots of snot barfs =( Lots of spitting. I guess it all has to go somewhere since she's not swallowing. But she did have a happy day in general. Lots of cuddles, cartoons, and kicky feet.
Last night I posted a video of her squirming a lot and asked for thoughts - apparently I deleted the sentence where I mentioned she does not seem to want to be adjusted (since that's what it clearly looks like!) Sometimes when we ask if she wants to sit up, she definitely says yes and seems content when she's moved. But during these times, we ask if she wants to sit up or roll over or otherwise change positions, and she shakes her head no. If we do it anyway she immediately squirms and wiggles her way right back down... and then just does that floppy fish motion some more. So... based on suggestions, possibly itchy, possibly uncomfortable fabric under her back, possibly uncomfortable gown... We will look into those!
I met with Suzi today - an amazing nutritionist (and so much more) who is helping with Julia's nutrition while going through chemo and recovering from her stroke. We had a very therapeutic talk. About Julia, we talked about how her brain injury isn't really being discussed in the hospital - as a possible factor for why she's tired, fussy, agitation, sleeping less, etc. And with a lot of personal experience with brain injuries / strokes, she was very insightful about what might be going on and what to expect. Julia has so much more 'urgent' stuff happening right now, with the trach / cancer / chemo / spine fusion, that her stroke just kind of gets put aside... with her floppy left arm being our only daily reminder. CLEARLY that brain damage IS affecting her (in her arm), so what's it doing inside her head? Is she getting over-stimulated / extra frustrated / confused? Is there a "stroke-recovery" way to handle things on top of what we're already doing? So we'll keep that in mind going forward.
And more of an emotional side of the conversation -- logically, I know my life has completely changed. But I think subconsciously I'm thinking... if I just get through this next day / week / month, everything will go back to normal. My little 1 year old will come home, with her long pretty hair, running around the house, wearing the last pair of boots I bought her, splashing in the tub, eating her PB&Js... My cat will be there, my dad will be there, my old job will be there. I feel like life just split into two tangents, or maybe my "real life" is on pause while I deal with "this thing I just need to get through", and then I'll get to go home to everything I left waiting. Or maybe there are two different Julia's. They look so different, they act so different, and their situations are so different. MY Julia was a healthy, smart, beautiful, vibrant, energetic, normal two year old. THIS alternate-reality Julia is very sick, fussy, and frustrated... with so many unfair struggles, and looks almost unrecognizable with her hairless head and chubby cheeks. I think sometime between November and January my brain just shut down and went into survival mode, and I'm expecting my "real life" to come back any day now... with my real Julia. And every now and then when those two worlds do merge, I realize I'm comparing who she is now to who she was then. I'm not as happy as I should be with her miraculous progress, because... she could do this before. She could open her eyes in October, and clap her hands, and say words, and touch her toes, and bounce on donkey. So clearly this skewed reality is not doing her any favors, so I need to fix some stuff in my head. I need to stop expecting the past to come back, and just understand this is what I have now... that this adorable, chunky, loving, bald-headed, covered-in-scars 2 year old is the real Julia.
... that was an unexpected tangent.
ANYWAY! Picture is from her PT session, with a few art pieces I've been sent over the past few weeks <3 And SUPER happy baby in the video tonight (/sarcasm) Featuring her brand new Wookie cry. I ended with a short clip from right before we traumatized her with Donkey of her wiping her own nose and being happy <3
Edit: I know some people have contacted me about custom trach chains rather than velcro. I just can't remember who, and my inbox search isn't helping. If that was you - please message me again! We're very interested in trying custom ties so give her pretty little neck some breathing room <3
. ******************************** ********** 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 Children's Book: https://amzn.to/2CTTN2S Jewelry: https://etsy.me/2E1mR8i
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