Nora's Blog: April 2011

Wednesday, April 6, 2011

change

First time on her bike with training wheels

After (sneaky little girl) eating a bunch of chocolate caramels that I made and left on the counter

I changed the blog background. All the blogs that I read have custom fancy stuff. I have NO idea how to do that. You most likely have to pay for it. I do like orange. I don't really even post so much anymore. I am past the point of really stressing out and obsessing over everything Nora.

She is doing great. Don't get me wrong- She has some major delays -socially, cognitively, communicative and has some behavior issues (she runs away from me or whoever anytime its time to transition-to the car, take a bath, get on the bus, at school, in the store, where ever) it's exhausting trying to reason with her and then I end up just dragging her to where she needs to be. She is heavy. Very heavy. And she won't poop in the damn potty.

She's going into a self contained kindergarten next year-not a typical general ed class which bums me out but hopefully someday she'll get there.

She is such a happy and fun and loving little girl. She always puts a smile on my face. I love her to pieces. I was remembering when I found out she had arachnoid cysts- they sound so awful-I assumed I would have to decide whether to terminate the pregnancy or not. Obviously that wasn't the case-arachnoid cysts aren't that big of a deal, or so they said. But I remember thinking for a split second I didn't want a child with a disability or have a special needs child. I couldn't imagine having to deal with it. I only wanted perfect. Turns out, that is what I got. She is perfect for us.

People used to tell me "thank god Nora got you as a mom, otherwise who knows what could have happened to her" I would get so mad and think that just because I am dealing with it all, do I deserve to have a non perfect child? Why me and not someone else? and I would think, what else is there to do? let her sit in a corner and not do everything I can to help her thrive and grow?

Turns out, we both lucked out. She got us and we got her. She is perfect just the way she is. Except the poop part. That I could live without. I am ready to be diaperless. Really, I am. 7 1/2 years straight. Enough already.

I'll be 40 in 4 days. Yikes.

Emma's new favorite song- Just the way you are

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.