Wednesday, April 30, 2008

It's official....

I think I can officially say that Nora has said "mamamama" in reference to me. When I picked her up from class last week her teacher said "There's mama!". Nora ran over to me saying "mamamamama". I wasn't sure if she was just repeating or if she really knew she was talking about me. But I took it anyway. Then today, I picked her up from the Y daycare and as soon as she saw me she ran over saying "mamamama". SO I think it is official. She knows who I am!!!! Yay Nora!

So her 1 year anniversary has come and gone. She has been seizure free for 1 year. I am so glad we never had to deal with any reoccurring seizures. There are so many kids out there who have Infantile Spasms and are still dealing with seizures everyday, multiple times a day. Nora is very luck that the 1st medication we tried got rid of them. PHEW. And she is doing great. She is happy and progressing everyday and we are all starting to feel back to "normal" again.

We will never be a typical family because Nora has special needs but at least the medical nightmare is over. Knock on wood. So on to bigger and better things. Like talking. And kindergarten for Emma next year! Yikes. Have a great day.

Thanks for checking in.


Saturday, April 19, 2008

Almost a year

On April 24th it will be one year since Nora was diagnosed with infantile spasms. On April 26th we started ACTH. I was looking at pictures the other day and she was unrecognizable. It is amazing how far she's come in one year. She is such a happy little person and is always smiling. She can walk, run, go up and down stairs, say some sounds, understand many commands, feed herself, roll a ball, play with her sister, laugh, play with toys, giggle, throw temper tantrums :), climb up and go down a slide, get mad, cry when I leave :), and so much more. I never would have known we'd be here one year ago. I was so sure she'd be "retarded" and not be able to do any of these things. But she can. And we are so very very lucky.


Look down at the pictures and see how Nora looked after the ACTH and see her now.

Friday, April 11, 2008

Infantile Spasms and TSC: A Devastating Diagnosis

Here is a video that explains what Infantile Spasms is and how it affects our family. Nora does NOT have Tuberous Sclerosis but the results of IS are the same