May 25, 2019

Decent morning... grumpy afternoon and evening.  All her counts are solidly on the way down from chemo (white cell, red cells, platelets), so she's exhausted and overall pretty miserable.  Sometime during the week they should start to rise again, and she'll be the happiest of the cycle just before it starts again.  We expect an MRI after NEXT cycle.  Other than a ton of snot, her vitals are still great.  Still no complications from this "high complication" chemo - so she'd doing fantastic!

She really enjoyed reading a Peppa book (over and over and over) early this morning, but the rest of the day she grumped.  That same Peppa book got thrown a lot.  Along with Tiger.  And anything else she could reach.  She threw a fit anytime Reed tried to leave, and she was not happy to see ANY nurse today.  No one got any waves.  Certainly no hi-fives or kisses.  

She's still a snot waterfall.  They are waiting for results from her allergen test to come back.  I guess that determines if she can stop a certain antibiotic as well as start one or two new meds to help dry her up a bit.  Hopefully some relief... it's making her so miserable =(  Also, Reed is asking about several of the suggestions from the comments last night (anti-nausea patch that helps with secretions, and a chain for the trach [rather than velcro]). 

She has not had floor PT in 2 weeks =( They don't do it during chemo because it just takes so much out of her, and they didn't get to it this week at all (and they're not in on the weekends).  That's one plus with her being home (or at a facility) - just more opportunity for exercise.  Though she IS doing a lot on her own!  She grabbed her own foot for the first time today and was super content just pulling on her own toes <3 And we're going to bring her bouncy donkey down to see what PT can do with it... possibly really great, possibly really bad!

Reed reviewed all the class stuff for an actual trach change, and I guess he's going to participate in the next one she's scheduled for which is Monday (it gets changed once a week unless there is a problem, such as it gets filled with gunk).  He says he has no concerns.  Even just hearing that he's going to do it made me anxious.  And it got me thinking... when I was like, 15, I was at my grandpa's farm (hi grandpa!) and we were shooting shotguns.  Mine went off "unexpectedly", and ever since, I've had a super over-the-top fear of guns.  I don't mind OTHER people having guns, and I love playing video games with guns... but if I'm actually physically near a gun, I get irrationally terrified.  I don't trust it.  I don't know what it's going to do... I feel like it will fire if I even get near it.  I realize I have that same fear of this trach.  I feel like if I nudge it wrong, it will fall out and she'll immediately die.  My fear of it is ridiculous, and I'm not sure where it came from.  But I realize this is why I can't even WATCH them do a trach change... I feel like somehow I will accidentally interfere, screw something up, and then watch her die. I'm not a psychologist, but my best guess is it's a control issue.  (I'm also terrified of flying.)  My assumption is I don't REALLY know how the trach works, or what it's doing, or how the respiratory system actually works... so because I don't know enough, I'm afraid of it (like flying and guns).   I've gone 34 years just avoiding things I'm afraid of, but I can't avoid this.  So it's a lot to overcome, and like... my kid's life literally depends on me doing it right.  No pressure.  

Anyway... clearly I have a lot to work on.

Picture today is LIMITED happy baby - early in the morning while reading Peppa <3 And no video "because she was a grump factory" - Reed.  So I picked a video from October - just one week before we took her in.  Many people have asked if she could talk.  She could talk minimally - and you can hear it in the video.  (Gabriel already has way more words, and he says them way more clearly.)  Also, you can see how she's laying.  This is the ONLY way she'd lay the last month.  It's a totally normal way for a toddler to lay!  But looking back, we realize she started laying with her neck hyper-extended like this around September (sleeping, watching TV, laying on the floor, playing with toys, etc.).  We only noticed there was a problem when we tried to physically adjust her neck/head position... but like... who does that to a 2 year old?  So we only really saw it while trying to buckle her into her car seat.   But even with a sore neck... happy baby!

YouTube: https://youtu.be/MfWmnF61d9Y

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