Sadly, I saw signs of the spasms today. It is extremely faint - her arms and legs barely tense up, and she looses her focus. It is not bothering her - but I am assuming it will continue to get worse.
She is still crossing her eyes too (this started a few days ago). Sometimes it is really upsetting to her, and other times not. She has done it when she is tired, but also after she wakes up from a nap. Our Dr. said it could be tied to the Infantile Spasms. I emailed him today, so hopefully will hear something soon about our next steps. I'm guessing we are going to have another EEG done and maybe move forward with the ACTH treatment. We'll see.
I'm just bummed because she has been soo happy and seemed really normal this past week. I almost forgot we were in the middle of a crisis! Just kidding, I didn't forget. Actually, we got her signed up with this great therapy program and she is being assessed by the Westside Regional Center this weekend. They offer all kinds of help and it is state funded. Also, my friend Crystal (who is a social worker in ND) had someone she knows send us a ton of helpful information about organizations that offer assistance in CA.
Anyway, thanks for keeping us in your thoughts! I'll update this once I know what is happeneing.
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Social worker I'm not, although that's what all my clients think we are. Didn't quite finish school that far. Any way I am so glad the info I sent is helping you out. There is so much out there you do just have to dig and search and hear a lot of no's as in you don't qualify etc. So sorry to hear the seizures are back. Hope to talk to you guys soon. I know your busy and overwhelmed. Our thoughts are with you and your family at this time. Give yourself a big hug you're a strong woman always have been and I've always looked up to you for that. Just remember that
God isn't giving you anything you can't handle.
Hi Erin and Keith. I was with Keith's mom over the weekend and shared that I never let a day go by without checking to see how Marleigh is doing and that I was concerned that there was no update since "bump in the road". She thought I should let you know that I think about you and your family everyday and am wishing all is well until we get to hear an update. Your daughter is beautiful and I am confident she will give you more than a few grey hair with her name on!!! Thinking of you always and appreciate your keeping us all informed of your progress and challenges. JoAnn
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