Nora's Blog: Camping

Tuesday, June 14, 2011

Camping

Big lollipop, little girl

backyard shenanigans

Summer birthday party

Pool party

Oh lordy. we are going camping this weekend, in a TENT, mind you. No fancy RV for us. This should be challenging. Nora is loving it now, in the back yard. We'll see how she does in the wilderness. I'll have to tie bells on her and tape glow sticks to her so if she gets away we'll be able to find her.

Emma's last day of school was Friday and we had a pool party to celebrate. SO fun. 3rd grade, here we come! Nora still has a week left then a few weeks off until summer camp starts.

Hopefully the weather will warm up here in the NW soon. We have lots of swimming planned so it better!

Thanks for checking in!

1 comment:

Smilen Champ said...: Hi
my name is Jenna and I came across your site. Nora is an amazing courageous strong and determined fighter. She is a brave warrior, smilen champ and an inspirational hero. I was born with a rare life threatening disease, and I love it when people sign my guestbook. www.miraclechamp.webs.com; July 17, 2011 at 3:00 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.

Tuesday, June 14, 2011

Camping

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