Daybue Trail: 3 Months In
Posted on September 29, 2023 by melelllan
Well, this sure has been a rollercoaster of a ride; I don’t think it’s stopped, but I do think we are slowing down. Things seem to be settling in the Rett doctor community with each bit of information, parent input, trial and error; a consensus is starting to form, and we will all be better off for it.
I read daily about the tremendous strides children and adults have made, as well as the stories of those who couldn’t make it work or saw changes in the wrong direction. One parent called it a “bipolar medication”; such is the humor of our community.
But this is Katelin’s journey and I have the bravest, strongest, has faith in her momma girl I know. She’s lived through a 2nd degree, chemical burn from diarrhea (not caused by Daybue directly, but by medications that were supposed to stop it and an antibiotic), nearly 3 weeks of burn cream treatment, a loss of 22lbs, gas pain, and more. She’s handled it so much better than I would have in her place. I can only believe she believed me when I said, “we would get through this, and I would find a way.”
We’ve been back on for 2 weeks now and thanks to the little mad scientist that lives in my brain, at 30cc 2x/day we are making it work. I cannot tell you how relieved I am to go from nearly 20 diaper changes a day to a normal amount. My pocketbook is happier, too. Taking into account that Katelin hasn’t actually been on Daybue for three months, it’s hard to say how many more improvements I might be seeing by now, but I’m not scoffing at what she has achieved.
Her gross motor skills…BAM! Her walking is so improved it’s ridiculous. She hops out of her chair, walks down the stairs like a boss, up the stairs of the bus and goes straight to her seat, like it was the most natural thing in the world to do. Her ability to maneuver out of tight places or confusing places is mind-blowing. The fluidity of her movements shows no hesitation nor confusion. She is pointing and reaching with intent, even from across the room! Once, she saw a Gatorade bottle in a video and pointed to it, so I got her one and she drank it right away.
Her language is improving, though I had hoped it would be a bit further along, but then I could just be greedy. She is babbling all the time, mostly words she already says but in a more conversational way, if that makes sense. One super cute moment was this past weekend at her nieces’ soccer game. They were behind, not communicating well and she goes, “Help! Come on!” It was appropriate and perfect for the moment. I told her, “You tell ’em, Katie!” and she smiled.
As her skills are improving, her frustration level is increasing. She can find the YouTube icon, the Pandora icon and the iTunes music icon, but she often can’t find the item she wants to hear or watch. Gone are the days of PBS and Barney, but what to replace them with is escaping us and she’s irritated about that. I’ve tried Disney movies and a variety of shows, but nothing seems to stick. She is, however, getting pretty good at picking a book app and getting it to autoplay, which takes a few steps. She could pick the book before but getting it to play has always stumped her.
One not so great change- she is adamant that I am not on the phone, at all. “NO PHONE”; “Your fault, on PHONE!” She’ll take it from me and throw it, lol. A bit of a spitfire. It seems a lot of things are “my fault” now that she can say it on a regular basis. Too dark to stay at the park…my fault. The mall is closing…my fault. Such is a mother’s life, lol.
Two more observations over the last two weeks- boy, is she strong! Gone are the days when I could simply direct her with my hand, nope. If she’s not having it, it ain’t happening. Which brings in the second thing; it seems Daybue comes with a bit of obstinance mixed in. Usually, this sort of thing is over in the younger years. All I can say is it’s a lot easier in a parent’s younger years! There’s a lot of coaxing and explaining before the ultimate, “fine, but I’m not happy about it!” look.
I think we are entering a challenging time, one in which the dynamics of our routine will need to evolve as she gains more autonomy. But for all the twists and turns, all the white-knuckle moments on this exhilarating ride, my favorite moment yet is the time she let me paint all her fingernails and let them dry, for the first time ever while she was awake. A normal mom and kid thing, in broad daylight; the stuff of legends. ❤
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