Good night sleep

It's amazing how a good night's sleep makes everything better. Nora slept 12 1/2 hours last night w/ only a few minutes of waking up. She is very stuffy and her nose got gooped up so I cleaned her up and she slept until 9:30 am!!!!!!! We are all in a much better mood today.

Even with a cold, she has been very smiley and happy. Making great eye contact and playing with new toys every day. She still loves loves loves the music cubes. Alex walks around all day everyday whistling the cube tunes. But she seems to be making leaps and bounds in development everyday. She doesn't look so drunky when walking. People who haven't seen her in a few weeks are amazed at her walking.

Hopefully this cold will blow over and not turn into an infection. Only a few more weeks of summer!!! Wish the weather would warm up so we could at least have a few days of pool time.

Thanks for checking in.

Lori

One month w/o steroids

So Nora has been off the steroid ACTH for 1 month now. Still seizure free-84 days so far. She is starting to slim down and look like her old self again. I do get comments on how big she is for her age etc. I think she'd be pretty big no matter what.

She had speech therapy today and her therapist, Grace, commented on how much more alert and happy she is. She also said Nora is sustaining eye contact longer and seems to be initiating interaction more. Hopefully one of these days she'll just blurt out Mommy and Daddy. We'll see. We definitely have a lot to be thankful for. She is walking and happy and no seizures. And awfully cute.

Emma turns 4 pretty soon so she's getting excited. She got a new bed -she was on a little toddler bed, and is excited about that too.

Thanks for checking in
Lori

Rainy day

Nora had school today. We were an hour late getting there. The traffic was so backed up due to the rain and an accident. So she was at school for maybe 40 minutes. Oh well. We also went for a blood pressure check at Children's Hospital. It has finally come down to normal so hopefully she'll be able to be off of that medication. Still no word on when we would start the new seizure medication. We meet w/ the neurologist Aug. 3rd so maybe after that. I am in no hurry to change anything at this point. She's been seizure free for 11 weeks and I would like to keep it that way.

We had a great vacation weekend. The weather was great and the kids had a great time on the beach. Can't wait to go again next year.

Thanks for checking in
Lori

Weekend getaway

We're off to the Oregon coast w/ our friends Lisa, Tian and Lucas. We'll be back on Monday. Have a great weekend.

Lori

EEG

Eeg resutls are in. It looks good, no more infantile spasms. But because she does have such large cysts in her brain, there are "spikes and discharges" during her sleep pattern. That means she is most likely to have other types of seizures at some point. So she'll need to stay on an anti-seizure med for a while (or forever). They want to introduce a new medication called Lamictal which can have deadly side effects if not given properly. She could get a rash and her skin could fall off and then die. (Stevens-Johnson syndrome) That makes me feel a bit apprehensive. I guess if it is introduced slowly enough, over 6 months, there are no side effects.

So-we'll see about that I guess.

Emma has swim lessons this week and the sun is shining. Thanks for stopping in.

Lori

Sleep saga

So Nora likes to wake up at 4:45 am everyday and not go back to sleep. She isn't crying, just up. We have to put her in the guest room so she doesn't wake up Emma. It wouldn't be a huge deal except she then wants to go back to sleep at 8:00 which is when we need to get going. Nora has to be at school at 9:00 and it takes 20 min to get there. And then Emma has swimming at 10:00 so it really messes up our schedule. She's never been a great sleeper but this is crazy. She only gets 8 hrs of sleep. Then her nap schedule is all screwed up. If she could make it to 6:00 I'd be happy. Grrr......

Anyway, we had a fun weekend. Birthday party, Grandma and Grandpa came home from TX, dinner w/Lucas & co. We leave for OR on Thurs. We are going to the beach for a long weekend. Yahoo. And we don't have ANY doctor appointments for the rest of July. Hope I didn't jinx it.

Thanks for stopping in-don't forget to sign the comments!

Lori

Autism Center

Nora had an "evaluation" at an autism center. The doctor was very nice and informative but we didn't really find out anymore than we already know. She does have autistic behaviors but that may be due to her brain malformations. If she does get diagnosed w/autism, it won't be until she's about 2 yrs. old. The dr. also mentioned one other avenue we could try to get her some services to help her development. But beyond that, it was just another doctor appointment for Nora.

We all had fun watching the fireworks last night. By all I mean Alex and I. Emma watched w/her hands clamped over her ears and Nora slept through the whole thing.

Nothing too exciting for our 5th yr. wedding anniversary. We ordered Thai food and called it good. I guess for 5 years you are supposed to give wood products. I'll give Alex some 2x4's so he can finish the basement playroom project and he can give me some new wooden spoons. Very romantic.

Thanks for checking in. Don't forget to sign the comments. I like to see who's been reading about our very exciting lives.

Lori

July 4th

Nora had a fun time at our friends Mark & Lesley's house last night. Emma really liked playing with all the bigger kids too. Fun times had by all. We are going to the Broderson's house tonight to see the fireworks and have a bbq.

Nora has been very interactive (for her) and very happy and smiley. I think the effects of the ACTH are wearing off and her personality is coming back. She's still working hard on her walking and looks like a drunken sailor. But she's very motivated and determined. The speech therapist sees a lot of improvement in her communication. I have a hard time seeing the progress b/c I see her all day everyday.

Have a great day!! go USA

Lori

EEG

Nora had her EEG today. We won't have the results for a few days but hopefully she'll pass w/flying colors. She hasn't had a seizure that I know of since the end of April. She still has to take some of her other meds (not injections) for at least another month but hopefully that will be it.

Nora also started summer school today. She's in the same class as during the year except she won't have an aide to help her. She's a big girl now, very independent.

Mim and Brynna left yesterday. We are all very sad. It was so much fun for us, especially Emma, to have the company. Of course it's 80 degrees today and was a bit chilly last week.

We have a very busy week. 4th of July festivities on Wed. Our 5th yr. anniversary on the 5th. Nora also has her autism evaluation on Thurs. That should be interesting.

Have a good week and happy 4th!

Lori