Day 30

Overall, today was a good day. Katelin ate some breakfast on her own, her hand use is still good and she asked me what time it was. This is the first new thing in a few days. And she was very happy to be going on the bus :). OffIMG_3902[1] we went to The Mad Potter to paint. She tried to pour the paint, it wasn’t full enough, but it would’ve worked if it had been. She painted another tile all by herself, (I added in the flower, with a little help from her thumb)

We made a new friend! I think he was super excited about the macaroni and cheese on her fingers, but she loved all the kisses from Shakespeare Valentino :).IMG_3895

She got upset on the bus when someone asked about her and why we were in Texas. No more educating people about Rett Syndrome and NNZ-2566 while we’re here or in front of her.  She covered her ears and cried. She wouldn’t eat supper and the noise in the dining room was too much for her.

I am very sad for her, she’s being so very, very brave. She’s trying so hard, you can see it when she starts to calm down. IF Katelin got the NNZ, in a way, the change in her behavior is an encouraging sign that it makes a difference, even though it is hard to go through. I hope no one reading this doesn’t not sign their daughter up because of this. Yes, it is very very hard believing that this is probably the start of her second regression, but it would be harder to live with no hope.

I am hoping for a good day tomorrow. The other parents are being wonderful, trying to help, and they are all hoping for her to feel better.

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This entry was posted in Rett Syndrome, Trail to a Texas Trial, Uncategorized. Bookmark the permalink.

4 Responses to Day 30

  1. PAm Kukla says:

    I REFUSE to let my heart — or yours — break. You are both so very brave and strong!

    • melelllan says:

      We’re doing our best. I really feel for those families who have and will go through this and I imagine it will be much more heartbreaking for those girls on the higher dose and their parents as I expect the differences made will be much greater.

  2. Nicolas CHARLES says:

    I often talk of the trial with my wife ; Katelin and you are SO brave. Thanks for all the Rett community. Are you on Facebook ?

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