Day 32 Anti-people day

Katie does not want to be around people today. Only mommy and only far far away from people. We did get to the Post Office, thank goodness there was a cute guy or it would’ve been ugly. Subway (lunch) was ugly and loud, even on the bus, which she typically loves. She wasn’t so weepy today as just simply pissed off. She’s barely eaten and I’m taking her in for a weight check.

Her improved hand skills are fading. I’m hand feeding almost everything or it has to be finger food. The few spoonfuls she did today had her right hand coming up.

No new words or anything new since the other day. If she’s up to coloring tomorrow it should give me a clearer idea of her coordination.

I am definitely feeling the strain and for the first time looking forward to going home. Today is the first day in a month I could use a break.

But, right now she’s quiet, snuggling with mommy, reading stories, and smiling. I hope she likes people tomorrow, I miss the company.

I would say based on these videos Katelin’s ability to self feed has almost returned to where it was before the trial. It seems to me that it took slightly longer to lose the skill than it did to gain it. This, in addition to the fairly drastic change in behavior, on one hand is disheartening,  on the other, if Katelin received the NNZ-2566, would suggest to me that this medication improved the symptoms of Rett Syndrome in Katelin, and that is very heartening indeed.

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4 Responses to Day 32 Anti-people day

  1. It is very hard to see our girls return to their old selves after receiving the study med was and still is for me. I hang onto the hope of by this summer that Phase 3 will be able to begin and in this phase if approved by FDA, our girls will receive medication and be able to stay on it. I am sure by this time Katelin is beyond ready to be home in her own environment just like the rest of us would be. Always fun to go on a trip but after awhile everyone is ready to be home again!! Bless you and Katelin for doing this Trial and Sharing all these amazing videos!! Sure wish we would have been in Houston during the time your there but didn’t work out. Would have loved to met you and Katelin. Again thanks so much for sharing. It’s been an inspiration to us all!!! Much Love.

    • melelllan says:

      Brenda, I am acutely aware there are those who have gone before us on this journey and I am so grateful. I am glad not to alone in this ocean of discovery.

  2. Wayne says:

    From her many performances over the last month, Katelin has become an international star. I eagerly tune in each morning to read and view the latest episode. Who could forget her pouring paint or drawing circles; hearing about new words and activities. We have become a witness to all the little changes in her world and share in the hope that the Trial will make a difference. Rett is something I view from afar but thank you for making it personal. Merry Christmas from Australia.

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