We were already planning on heading to Texas to see my wife’s family for Christmas and it couldn’t have come at a better time. We definitely need to be around family right now and so does the little one. Hopefully she stays as happy as she is right now. She can do so many things and after a period of regression she is progressing again which is cause for no small amount of relief in our family – though we’re not sure if it’s well founded or not.
As it turns out we were also able to get an appointment with Dr. Neul while we were going to be in Texas. He’s at the Texas Children’s Hospital in Houston and is supposedly one of the top doctors who deals with Rett. Deep down we’re hoping he tells us she doesn’t have it or at the least gives us some medicine to drastically slow any symptoms of Rett. In reality if we walk away with a few answers about what it is we are dealing with – that’s probably the most we can hope for.
We will be missing almost 3 weeks of therapy and are both anxious that that could be detrimental. We will do our best to emulate therapies every day, but neither of us are professionals.
I just have to remind myself of my mom’s advice regularly – Miracles happen every day. We just need to be one of them.