Nora's Blog: April 2008

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.

Lori

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.

Lori

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

Nora's history

Nora Frances was born February 7, 2006. She was a healthy girl, 8 lbs. 8 oz. Before she was born, we found out that she had an arachnoid cyst in her brain. Of course I was petrified but the doctors assured me that most people with these cysts never even know they have them. In future ultrasounds we found out that she had 3 of these cysts. When she was 5 weeks old, we had her 1st MRI done. Everything looked ok and we were told not to worry about the cysts unless there were problems. Nora developed on time up until around 9 months. She developed a "head tic" which I reported to her pediatrician. She said to "keep an eye on it". She also wasn't making good eye contact and she wasn't really responding to her name. By January, she wasn't crawling and we were starting to worry. We went to doctor after doctor after doctor. We finally went back for another MRI in March which showed some other brain abnormalities including agenisis of her corpus callosum and heterotopia. Then we finally saw a neurologist in March who scheduled an EEG in April. As soon as they saw her EEG we were sent to the hospital to start the anti-seizure drug ACTH. It has to be injected every day so we were trained on how to give the injections at home. Nora stopped having the seizures after one week on the meds.

Apparently the head tics we saw were seizures related to Infantile Spasms. The EEG showed hypsarrhythmias in her brain waves. If not treated IS can cause severe brain damage. Nora wasn't diagnosed until she was 14 months old. Even so, Nora showed development even on the anti seizure drugs (which usually slow down development). She started walking (well, taking steps) in May,2007. Since then, she's continued to develop and show us what an amazing little girl she is.