Good News

I took Nora to the neurosurgeon yesterday and found out that her arachnoid cysts (she has 3 of them) have gotten smaller and her brain has grown into the spaces. There is no need to shunt them and they don't seem to be causing any problems at all. That being said, she will still have them but hopefully they will not hinder her develpment.

The doctor doesn't think they had anything to do with her seizures. He thinks whatever the underlying cause of her brain malformations caused the cysts, the seizures, and the developmental delays. We just don't know what that cause is. We are still waiting for the 2nd round of genetic testing results. There are many possibilities that Nora could fit into, but nothing that matches her symptoms 100% so it is hard to pinpoint anything.

Anyway, no more MRI's for a long time unless there is a problem. Yeah!!!!

Thanks for checking in!
Lori

MRI etc.

Nora had an MRI, Baer hearing test and an endoscopy yesterday. It all went well, just long. She had to be put under anesthesia and was having her enoscopy, so couldn't eat anything from 5 pm on Thurs. and no liquids after 8 am on Fri. And our appt. was at 12:30 pm on Friday. SO needless to say, Nora was a hungry, thirsty girl by 2:00 when they finally came to bring her to the OR room. She was a trooper. She only cried for a bit then took a nap on my lap for an hour then we roamed the halls until it was time. Good girl.

So her hearing is normal, which we knew already but had to have medical confirmation. Her stomach and intestines looked normal so they don't think it is Silliac or any other allergy that is causing her diarrhea. We'll know for sure from the biopsy. It most likely is "Toddler Diarrhea Syndrome". Yeah right. Apparently she'll grow out of it by the time she's 4. Great. And we won't know the results from her MRI until Wed. when I meet with the nuerosurgeon.

Overall, it went well. She came out of the anesthsia fine and ate a good dinner and had a good night's sleep. So, hopefully no more doctor's visits for a while.

Thanks for checking in.
Lori

Big Girl

Happy Birthday Nora!

Mim finally got here after many cancelled flights thru Chicago. Alex gets home (hopefully) tonight and we'll celebrate Nora's 2nd bday on Sat.

She's going to bring cupcakes to school and then we'll have playgroup here after school. Fun day for the big girl.

Lori

Only 2 more days...

Nora will be 2 years old on Thursday. Wow. Time flies when you are at doctor's appointments, early intervention classes, speech therapy, doctor's appointments..... She is such a big girl. I am so thankful that she is where she is today. If I look back a year ago, she wasn't walking, making eye contact, or smiling that much. Now she is climbing on everything, falling a lot too, getting into every door, cabinet, drawer and crevice she can find. She copies sounds, can clap, likes to giggle, CRIES WHEN I LEAVE. That is HUGE. She has never ever ever had any seperation anxiety or stranger fears. I was so happy when she acutally cried when I left. I kept waving at her and she cried even more. I was jumping for joy. It means she actually knows who I am and gives a shit that I am leaving her. I am bawling as I write this because it is such a big deal to me.

I have been very emotional lately. It must be that time of the month. I also have been trying to figure out where Emma will go to school next year for kindergarten. Sounds easy huh? well it's not. The Seattle school district let's parents choose the schools you want to go to. We can tour the schools, meet the teachers, and then decide 1st choice, 2nd etc. This is torture for me. Having actually been a kindergarten teacher myself, you would think it would be a piece of cake but it is not at all. The Seattle school district does not have the best track record and I am panicking on picking out the school best for Emma. And she will only have turned 5 in Aug. so she'll be the youngest kid in the class.... Alex is traveling this week so I am going to have to make the decision for us. Grrr... I am not good with decisions.

My mom was supposed to fly in yesterday but her flight go cancelled and now she won't be here until tonight. That means 2 days from her trip were wasted. Emma was so excited and I had to burst her bubble twice. So hopefully she'll get out of Chicago today and be here when Emma wakes up tomorrow.

Thanks for checking in
Lori

Bad blogger

I am such a bad blogger. It's already February (and Alex's bday today).

Nora is doing well. She is almost all the way up to her highest dose of Lamictal, about 1 more week, and she'll be off Zonegran in 2 weeks. So far, no changes, good or bad. She turns 2 in a week(the 7th). What a crazy year it has been. She is such a different little person than she was a year ago. Even 3 months ago. She is changing everyday and is doing so many new things. She is still very delayed in speech but hopefully we'll see some communcation in the next year. She is busy as ever, 4 days of school, Speech Therapy on Tues., very busy always. She will be having her party next Sat. on the 9th.

Mim is coming to visit on Monday so she'll be here for the party. Alex has been in Vegas since Mon. and gets back late tonight. He then goes to VT for 4 days on Mon. So it will be nice to have Mim here to help.

Emma had some crazy rash all over her body a few weeks ago. It got pretty itchy and was really bad on her scalp. It went away after a week and 1/2 but then her scalp started peeling and flaking. Eww. Crazy dandruff girl. Well last night while I was combing her hair after her bath, her hair was coming out. Not a whole handful but enough to get me worried. She'll be seeing the doctor tomorrow.

So- hopefully I'll write more this month. Thanks for stopping in.

Lori