Nora's Blog: no more naps

Thursday, October 15, 2009

no more naps

Emma and an oatmeal chocolate chip cookie

Farmer Nora?

Nora has always taken a 2 hour nap but lately she wasn't going to bed until 9:30-10 PM or waking up at 5:30 am. So I have decided it is time to do away with naps. Kinda freaks me out. Those were 2 very nice peaceful hours to myself. But now she goes to bed 7:30 and wakes up 6:30 or 7 AM. Much better all around. And now we can do some fun things together in the afternoon and I am not tied to the house.

Mim and Grandfather are coming in 2 days. Very exciting stuff. It should be a fun filled week. Hopefully the rain will stay away.

Nora has been tolerating wearing a hat so maybe she'll be Old MacDonald for Halloween. Or a cowgirl. Or just wear orange and black. She's a tricky one and doesn't like to wear costumes. Emma is going to be Hermione Granger from Harry Potter. I need to find a yellow/maroon scarf for her somewhere. Wish I knew how to knit.

Thanks for checking in!

1 comment:

Sophie's Story by Elaine said...: I still do not have costumes picked out for my kiddos. Or have any halloween decorations up. Hmmm...I'm liking the orange and black idea.; October 19, 2009 at 1:24 PM

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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 15, 2009

no more naps

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