Nora's Blog: Birthday girl

Monday, August 17, 2009

Birthday girl

Emma Aug. 2003

Emma and friend Janey on Emma's 6th birthday

Emma with cousins Brynna and Katie in NY

Friday was Emma's 6th birthday. She'll start 1st grade soon. We had her check up at the pediatricians today and saw a brand new little guy who was a preemie too. He weighed 3 lbs 9 oz. Emma was 4 lbs. 5 oz. when she was born but went down to 3- 11. I told her she was that little when she was born. It is so hard to believe she is 6. Time flies. We will have her friend birthday party next weekend. Pool party time!

Nora is great. No changes since she has been off of her medication. Her school doesn't start until Sept.21. It's been a long break. I am sure she'll be glad to get back.

Thanks for checking in
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.

Monday, August 17, 2009

Birthday girl

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