Tuesday, September 24, 2013

Its working!!!

Hello All,
Been a while since my last update, a lot of things have happened...

We have a rheumatology appointment set for October 1st, followed by Genetics October 17th. So very happy to get these specialists on our team... I think genetics is the big step in the right direction for us.

Jaxson's on his highest dose of Trileptal, and he's still on Keppra...He's been falling still, but not at as much. His lip droop is still there but its not any worse at all, its mild and is only noticeable when he opens his mouth or smiles a certain way. His protective reflex is the same - still not  really there, but he is using some safety responses....so  I'm glad its not getting any worse so far!! His fevers are the same, despite the environment cooling down a bit...but hopefully we wont see anymore high 104's before we figure this all out!

On an amazing note, I do believe Jaxson's seizure medications are helping. I am no longer seeing starring spells, though I did see one yesterday but it was so short...I think it was more tuning out honestly...and the best thing is - he's starting to be more vocal!! He's making a lot of noses, different syllables.... Though we're not hearing anything "consistent" yet other than "sit", our speech therapist cried this morning and hugged me and said, " Im so excited, I just hope these noises turn into words and I really hope they stay... My fingers are crossed" and mine are too...Regression has been one of his biggest problems. Recently - He has regressed his skills with how he holds his crayons and "colors" as per OT, and he's regressed in some signs this week - However, that could just be because he's being more vocal than before!

He's doing really well and I'm over the moon with all these accomplishments. I have no doubt in my mind that these medications are helping him...and I'm just so happy.

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