Nora's Blog: Halloween

Thursday, October 29, 2009

Halloween

We went to a costume party last weekend. Alex and I were the local burger joint- burger flippers. Emma was Hermione Granger and Nora was a grumpy witch. She refused to wear a hat and the dress kept riding up. We are hoping to have her be Old MacDonald/farmer on Sat. She has a farmer hat she'll wear and I ordered some overalls and got her a checked shirt. Hopefully the overalls will show up today. If not, she'll just be in orange and black. She could care less about a costume.

I went on a field trip with Emma's class yesterday to another pumpkin patch. Nora has a costume parade at school tomorrow and Emma's class is having a Halloween party. Sat. Emma has ballet then the local businesses have a trick or treat during the day. Then out to the neighborhood Sat. night. Busy busy busy. Never ending Halloween.

Hope everyone has a candyrific holiday!

Lori

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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.

Thursday, October 29, 2009

Halloween

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