Nora's Blog: Come and gone

Monday, May 10, 2010

Come and gone

Nora 4 years old

Nora after 7 weeks on ACTH-16 months old

So Nora's 3 year anniversary for being seizure free has come and gone. I didn't even realize it. Is that good or bad?

May 2nd, 2007.

She had been on ACTH for 7 days and all the spasms were gone. I still had to give her daily injections for 8 more weeks. She was huge, didn't sleep, drank gallons of milk, acted like a zombie, got really hairy, had high blood pressure and scared the crap out of us. I had no idea what to think or what to hope for or what would happen to her. Would she walk? Talk? Live?

To think that today she is such a loving, vibrant, joyful little girl is unbelievable to the person I was 3 years ago. It was so hard to even hope that she'd be where she is.

This weekend we went around the block on her trike and she actually PEDDLED!!!!! This is huge. We've been pushing her on that damn bike for 2 years and nothing. She actually held onto the handle bars and peddled her feet. She made herself move independently. I was so excited. AND she stayed on the bike the whole time, didn't make a run for the street or in the opposite direction of me.

She got off the bus today in the same pants she went to school in. Her bus driver said that her teacher said that she used the big girl toilet today. They have been putting her in underwear and changing her a few times a day when she west her pants. But maybe she actually peed in the potty? I have an email into her teachers so I can get the scoop. I am sure you all will get an update:)

She just called for help from the kitchen-"Nora get down please" She was stuck up on the counter that she had climbed to grab a banana. How about that for communication! She is amazing. Truly.

Mother's day was nice, normal but nice. No breakfast in bed or any big surprises. Just some good times with my 2 girls. A walk around the block, yummy brunch (that I made), & sushi for dinner. Emma made me lots of cards and crafts. Nora's teacher made a card with pictures of Nora signing I Love You and every time Nora sees it she says "I love you" and gives me a big
kiss. Doesn't get any better than that.

Happy Mother's day to all the mommy folks out there and a special Happy Day to my mom. I love you!!

Lori

3 comments:

The Wilsons said...: Awesome news Lori, that's great about Nora. I think about her a lot, probably more than I think about the rest of you guys. ;) It's so amazing how well she's doing and I'm sure that she has a long ways to go, someday you will not just be putting her on a bus to school, but helping her move out on her own. I know it's a struggle, but you've done a great job as a mom!

OK, back to old Kevin. :); May 10, 2010 at 6:16 PM
Unknown said...: Lori.. thanks for sharing. I hope your story helps other find the strength and hope they need with IS. I found this site called rarediseasesnow.org which has a great resources and a blog too. Maybe you could share this blog there as well.; May 11, 2010 at 6:31 AM
Unknown said...: This comment has been removed by the author.; May 11, 2010 at 6:31 AM

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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.