Today ends Rett Syndrome Awareness Month, and a year since Katie got accepted into the NNZ trial. During this month, we (parents) post a lot about what Rett syndrome takes away, how difficult it is, how much it seems to win all the time, making our children’s lives so hard. But, today is the one day I’m not giving Rett syndrome it’s due. Today, I’d like to share all the things it didn’t take away this year for Katie. There are little victories everyday, and so many of you made them happen. 🙂
She got a lot of silly pictures taken.
She went to the Houston Zoo, A LOT!
And other museums and even the orchestra!
She had her hand measured several times, because mom thinks it’s cool to do it.
She made a TON of new friends
She got messy and made a lot of crafts
She got a runner, Molly, from IRUN4 who writes almost every day and sends her cool stuff!
She had a birthday-the BIG 21!!
She swam in the ocean and in the lake for the first time in almost a decade 🙂
And for 40 days she tackled Rett syndrome and won victory after victory.
Improved coordination and focus
Improved hand use and ability to focus
Improved hand use, right hand drops away
Improved following commands
and there was more, three full, grammatically correct sentences and this little exchange “Bee, B. E., Buzz”
Katie and all the other children and parents are pioneers-so I’ll leave you with one of my favorites, if not my favorite picture of all-looking into the future, like another pioneer.