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Daybue Trail: May MadnessPosted on June 1, 2024 by melelllanWhat...

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    image.jpg?w=852Daybue Trail: May Madness

    What a month, glad it’s over. Katelin will be needing to start a new day program, but I look forward to the change and am optimistic for better leadership and communication.

    It’s been a bit of up and down month for Daybue. Mainly, Katelin has decided… ENOUGH BANANAS! Bananas being the first ingredient in the BRAT diet, the diarrhea came back with a vengeance.

    I learned that the peppermint I gave for gas made her reflux worse. I learned that the medicine I gave for reflux had been causing adverse effects which I attributed to Daybue (they were started at the same time); so almost a year. Mom fail big time.

    I had to rethink a lot and stop for a few days. But, once I put together ANOTHER new plan- in the last few weeks some pretty incredible things have happened ❤️

    I’ve been watching the progression of her right arm usage for the last year. Slowly, she has used it more and further from her body. This is significant because she was temporarily paralyzed on her right side after seizures at 3 and she’s been a steady southpaw since.


    About three weeks ago, Katelin extended her right arm all the way. This hasn’t happened since age 3. She couldn’t reach a cup with her left, so she just shot out her right, grabbed it and transferred it to her left.

    This past week two things stand out. She picked up the broom and began sweeping the patio, she’s done that twice. She’s only using her left right now, but baby steps!

    The other skill she’s discovered is a bit problematic for me, lol. She likes the front door open and I would put chairs in the way so she couldn’t walk out. A few days ago, she PICKED UP the chair, held it in front of her, walked it down the walkway, put it down, and then sat down in it. You could’ve knocked me over with a feather.

    Since then, no matter what I put there, she finds the way out. Incredible.

    She’s also choosing to walk more often which I certainly approve of.

    It’s been a hell of a month. Bring on June!



    Posted in Uncategorized | Tagged Acadia Phamaceuticals, Daybue, Katelin Lancaster, Neuren Pharmaceuticals, Rett syndrome, Trail to a texas Trial, Trofinetide | Leave a comment

 
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