← Daybue Trail: Daybue TriumphsDaybue Trail: Day 21-26Posted on
July 19, 2023 by
melelllanWhat can I say, my child is a rock star. Despite ALL the challenges, a diaper rash that is kicking her butt, an appetite that can’t seem to find the bread crumbs back to home, and topped off with antibiotics, missed days at program, and not able to get past 20 cc per day, this girl is STILL beating the odds.
The Snuggler chair sees some snuggling ♥️
" data-medium-file="https://trailtoatexastrial.files.wordpress.com/2023/07/img_8668.jpg?w=300" data-large-file="https://trailtoatexastrial.files.wordpress.com/2023/07/img_8668.jpg?w=640" src="https://trailtoatexastrial.files.wordpress.com/2023/07/img_8668.jpg?w=1024" alt="" class="wp-image-5954" width="259" height="194" srcset="https://trailtoatexastrial.files.wordpress.com/2023/07/img_8668.jpg?w=259 259w, https://trailtoatexastrial.files.wordpress.com/2023/07/img_8668.jpg?w=518 518w, https://trailtoatexastrial.files.wordpress.com/2023/07/img_8668.jpg?w=150 150w, https://trailtoatexastrial.files.wordpress.com/2023/07/img_8668.jpg?w=300 300w" sizes="(max-width: 259px) 100vw, 259px" style="-x-ignore: 1">The Snuggler chair sees some snuggling ♥️
I cannot keep up with every new word, every new skill, every new quirk, nor every single medical improvement she is making. Let’s start off with medically important improvements- her apnea has all but disappeared. Seriously, I don’t know how, but it has. She hasn’t lost more than 8 pounds, but even by the first week it was much less and now she doesn’t snore at all. BOOM! Mind blown.
Then there’s her PCOS, I won’t go into much detail here, but it is having an effect in incredible ways. People with PCOS struggle with having a menses, weight gain, facial hair (bearded lady facial hair) and more. There are several aspects of this that have improved for Katelin and BOOM! Mind blown again.
She’s no longer reaching for my hand at all to go up and down the stairs and curb, alternating feet going up the bus steps. A dear friend of ours is visiting and she is walking around with her mouth open a lot, lol. In the last few days, Katelin has said, “visit”, when I said “Betty’s here!” When Betty was talking in general about a hotel, Katelin said, “go swimming at Cove!” (Cove is the name of the hotel, and yes Betty used to take her swimming there.)
Katelin is still having a hard time with symptoms, so I told her, “Why don’t you lay down?” and she said “Relax” I know that I am missing words, they’re just coming too fast. But, even those are put to shame by her hand use. She’s turning the shower all the way off; she’s grabbing my wrist and pushing my hand away when eating instead of just turning her head, and damn! she’s strong. Her arms are moving so quickly- grabbing whatever she wants, pointing to books she wants and then pointing where she wants them (either in the bed or on the chair); she looks at me, looks at an object and points right where she wants it to go. The other night we were sitting in the car, listening to music. The phone died; “sorry, Katelin, time to go in the phone died.” She looked right at me, then pointed at the car charger.
I am tired. She’s no longer vomiting her Daybue, that was an easy one to figure out; neutralizing it is the way to go for Katelin. Other parents have independently come to the same conclusion. The diarrhea is still a struggle. I’ve found out that Katelin is allergic to the most recommended solutions, including psyllium husk and Imodium. On one hand, I hardly think that’s fair; on the other hand, I sort of expected it, she has so many allergies. It’s just another Sherlock Holmes’ hat time.
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For all of that, seeing her dearest friend seeing and hearing all these things for the first time in her life, despite knowing her for 15 years, well, there’s something to be said for watching someone else see a miracle. ❤
(20min delay)