Tag Archives: Katelin

April is Poetry Month-Katelin Inspired

One of the first “poems” I wrote that was inspired by Katie was actually turned into a book! “Tyler and the Spider” is a story of acceptance, no matter the differences. It’s meant to show that being nervous and afraid … Continue reading

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Gold Medal Kids

Recently, Katelin rode a camel! Mind you, it took longer to get her ON  the camel than the ride was, but she did it. And loved it.  Rett syndrome is so often a race; a race to the hospital, to … Continue reading

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Conference Post 2- Raise Your Hand

I find it hard to decide what order to do these posts in; what struck me, may not be what struck others. However, I believe I can say we were all struck by Kevin Black. Kevin’s daughter, Cortney, passed away … Continue reading

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February, the new October

As most who read this blog know, October is Rett Syndrome Awareness month. But this month has seen its share of awareness, too. I was honored to give a presentation on Rett Syndrome and our NNZ trial experience to three … Continue reading

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I Wonder What I Would Do….

This week, as so often before, beautiful, loved children were taken from their families. Sometimes, there’s been a while to adjust, it seems, though what do I know? Only that their daughter has been sick awhile, but do they adjust? … Continue reading

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Happy Thanksgiving

  As you know, Katelin and I and many others feel a profound sense of gratitude this year, thanks to the success of the NNZ trial and the on-going IGF-1 trial. But, there are many other things, that I and … Continue reading

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Day 7

I’m tired as I write this and it’s only 6:50 at night. So much of importance happened today. First, it appears Katelin has regained her appetite, and along with it some behavior surrounding hunger. I am disappointed with this as … Continue reading

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