In a little less than a month Megan will turn 5! 5??????? It is definitely a milestone. One that seemed very distant and scarily not reachable. But here we are. It seems unreal.
She is getting so tall and looks like a little girl instead of a baby now - even though she is only weighing in at a whopping 25 pounds!!! She has little girl braids and little girl expressions - I can imagine her running and playing and what a spitfire she would be. Correction - spitfire that she is and how much more of one she would be if she were mobile.
She had an overnite EEG last week to see what was going on with her seizures. Fortunately there was not the infantile spasms pattern present - but seizures are still all over the brain and happening too frequently.
Currently she is on clobozam, zonisamide, keppra and gabapentin. There are only a couple that we have not tried to date. A few because they are contraindicated for use in mitochondrial patients so our options are limited. I think the ivig has been the most beneficial thing so far for her. She really is much more aware of what is going on and interacting a lot more. Still doing weekly sub q infusions and will continue for at least another 6 months. Just have to wait and see - as patiently as I can. My patience have grown immensely since Megan arrived. I don't even recognize me anymore most of the time. What is that saying:
I cant remember who I was back then...........that sums it up.