Nora's Blog: February 2011

Thursday, February 24, 2011

party girl

Head first down the slide-totally against the rules!

Presents!

Family photo-we all look a little greenish

Nora had a good birthday month. We had a family party, a school party, and a friend party. She LOVED her party at the YMCA with all her school buddies. Emma had fun too!

Alex is traveling a lot lately. Emma is doing great in school. Nora is staying busy with OT, speech, gymnastics and swim lessons on top of school.

I am trying to keep up with everyone! I had Lasik done on my eyes about a month ago and my left eye isn't healing properly. My vision is really blurry so they had to go in and scrape the lens. I think they'll have to do it again b/c it is still blurry. Such a bummer.

Thanks for checking in!

Lori

Sunday, February 13, 2011

Birthday girl

Here is Nora at her birthday celebration at school. She was sick with the flu on her actual birthday :( We'll have her friend party next week at the YMCA so she'll be able to run around and have lots of fun with all her friends.

Still looking at all the special ed programs around our area to see what her options are for Kindergarten. It is so over whelming and nerve wracking to think about change. More for me than her.

I'll post some pics after her party.

Thanks for checking in!
Lori

Wednesday, February 2, 2011

Almost 5

Seriously, in 5 days Nora will turn 5. How crazy is that?? She is such a happy girl. She really is. She is on the go from the minute she gets up until she falls asleep. She loves to play with her cars, read books, go to the park, go to school, play with friends, watch Tom and Jerry...

I am so happy that she is here and that we have her for our daughter. I just love her so much I want to squeeeeeeeeeezeee her all the time. She hates that. Sensory issues and all...

I'll post pics soon. I have been very lazy taking pics lately. Alex has been traveling and I've been single parenting.

Thanks for checking in
Lori

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.