Friday, October 18, 2013


So, We have seen genetics. What an intelligent bunch of people!! We don't have any answers but they took a bunch of blood work and our first steps are to check for double chromosomes, issues within the genes, metabolic disorders and a specific mutation to the Rett Syndrome Gene. She said we have many steps to complete, but she felt she could help us. I am hopeful, but it'll be 2- 4 weeks before we get the results, I'll let you all know when we do, and then possibly on to the next step.

In the meantime, more blood work for Jax this am and next week to check his trileptal levels. I'm sick of blood draws and he is too, at least we buy him tons of presents afterwards!

We are going down to Boston on the 2nd for an In hospital long term stay EEG. We will be there for about 4 days. They have also scheduled a LP (spinal tap) on Jaxson. I guess the Neurologist is a little suspicious of something he saw on the MRI, but wants to see what his EEG shows first. Fingers crossed, because the thought of a spinal tap makes me through up literally in my mouth every time I think about it. I use to do it everyday on dogs back when I was working at the neuro clinic, but that really doesn't bring me any comfort at all.

So for my family, I probably wont check in for a while, until we hear something different. If you want to be kept in the loop, or you want to know about Jaxson, please ask me personally and I'll tell you everything. I can't think straight these days...and checking in = support.

Onward and forward, its almost Jaxson's 2nd birthday...Holy Moly!

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