Nora's Blog: October 2009

Thursday, October 29, 2009

Halloween

We went to a costume party last weekend. Alex and I were the local burger joint- burger flippers. Emma was Hermione Granger and Nora was a grumpy witch. She refused to wear a hat and the dress kept riding up. We are hoping to have her be Old MacDonald/farmer on Sat. She has a farmer hat she'll wear and I ordered some overalls and got her a checked shirt. Hopefully the overalls will show up today. If not, she'll just be in orange and black. She could care less about a costume.

I went on a field trip with Emma's class yesterday to another pumpkin patch. Nora has a costume parade at school tomorrow and Emma's class is having a Halloween party. Sat. Emma has ballet then the local businesses have a trick or treat during the day. Then out to the neighborhood Sat. night. Busy busy busy. Never ending Halloween.

Hope everyone has a candyrific holiday!

Lori

Friday, October 23, 2009

Pumpkin Patch

Yesterday we went to the pumpkin patch with Mim, Grandfather, Lucas, Daddy, Mommy, Emma and Nora. Everyone had fun tromping through the mud, getting lost in the corn maze, feeding the alpacas and petting chickens. Nora gets a bit wild when there are no set boundaries so she was running wild through the maze and we'd have to bushwack to go get her. And the mud made for some fun slipping. We got some good pumpkins to carve today. It was a fun day.

We have had a busy week with Mim and Grandfather. Pumpkin patch, Pacific Science Center, mass at Holy Rosary, Farmers market, Alki beach, Magnusen Park, haircuts, EEU ice cream social, saw orcas swimming in the sound off Alki, and lots of eating! They go back to NY tomorrow. I am sure they will be glad to get a rest! These girls keep them on their toes! Thanks for coming Mim and Grandfaddy. We love you!!!

Lori

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!

Friday, October 9, 2009

Busy busy busy

We have been very busy lately. Emma has been doing cross country and has had meets every Sunday. We have pics but not sure where. Last weekend we went to U of Wash. to support our good friend Luke and his family in the Autism Walk. We had to leave early so Emma could go to ballet. I am of course not in the picture because I always TAKE the pictures.

Nora has been going to school. Emma has been going to school. I have been volunteering, doing recess duty, co-chairing the parent council at the EEU, getting my car fixed, making dinner and other exciting stuff like that. Wish I had more news.

In one week, Mim and Grandfather will be visiting. I am sure we'll have plenty of excitement then so stay tuned...

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.