Thankful

I am thankful for two beautiful children. I am thankful for my wonderful family. I am thankful for my family's health. I am thankful for Nora's gagas and buhbuhs. I am thankful for Nora's big smile everyday. I am thankful that she can walk and feed herself. I am thankful that Emma loves her sister unconditionally. I am thankful that I have a loving husband who is also a loving father. I am thankful for the clapping Nora has learned. I am thankful for that Emma knows how to count to 30 and loves to dance. I am thankful that Ollie lets the girls crawl all over him. I am thankful for all the support from my family and friends. I am thankful that I can stay home with my children. I am thankful that Nora and Emma are happy little people. I am thankful that I can sleep until 6:30 am (somedays). I am thankful that even though I am not always thankful that we have to live with Nora's disabilities, that I can still be thankful for all we do have.

Happy Thanksgiving
Lori

fun weekend

Nora has been having such a good week. She is doing very well in school, happy and progressing nicely. She's been clap happy and saying "B" sounds and "Ga" sounds a lot. She'll also make an "M" sound sometimes too. Now we just need her to start pointing or using signs so we can get some communication happening.

We went to the GI doctor the other day and learned that there is nothing wrong with her system -most likely- and have to wait it out. Although they didn't really do anything while we were there, just looked at the tests we had already had done. Grr... so frustrating. There are still some blood test to do to see if it's an allergy or something but that's probably not the issue. SO we just have to deal with mushy diapers.

We are going to start her on Lamictal again tomorrow so hopefully she won't get diarrhea again. If she does then we will probably have to try a different anti seizure med. The Zonegran has been keeping seizures away but it delays her cognitive development & we want her off asap. So it takes about 8 weeks to get her to a high enough dose of the Lamictal. Then we can wean from the Zonegran.

Emma is going on a field trip to the fire dept. near her school tomorrow. We went to the Children's museum today and the girls had a lot of fun.

Hope you all have a great Thanksgiving!
Lori

The clapper

Nora learned how to clap yesterday!!!!! It sounds like a small thing but it is a HUGE accomplishment for her. AND she copies us if we clap. That is enormous!!!!!!!! We are all so excited and jumping and cheering for her!!!! It gives us hope that she'll learn more involved communication. We are working on some signs so she can let us know what she wants. Milk, all done, and more. And we need to get her little chubby finger to learn how to point. Then at least she can point to what she wants. She is doing great in school and learning new skill all the time.

We are having her evaluated at the UW Autism Center in December so we'll hopefully get more information on how to teach her new skills. If she is diagnosed w/autism, she'll also qualify through the school district for more service than if she is just "developmentally delayed".

Alex and I went to an auction last night for Outdoors For All http://outdoorsforall.org/ which is an organization that helps "disabled" kids and adults get out and experience the snow, biking, water, etc. K2 was a big sponsor and helped raise over $500,000! It was very heartwarming to see so many donors. I hope we can get K2 to donate some snowboards/skis to Nora's school's auction in the spring. It was fun to do something a little different.

Thanks for checking in
Lori

Halloween

Nora was a cute little monkey for Halloween, monkey sounds included. Emma was the wicked witch of the west, green face included.

Nora has been doing well at school. Still no communication at all. That is her biggest deficit. We'll take a point or a sign-anything.

We need to decide whether or not to get her evaluated sooner than later for autism. If she is diagnosed, she'll hopefully get more services through the school district when she turns 3. Considering she's not even 2 yet, I don't know if we should wait awhile. I feel like we are at a doctor's appointment every week so I try to space them out if I can. There was a big media surge on autism lately. The today show had a segment on how kids should be tested for autism before they're 2. We meet with her pediatrician tomorrow to go over a list of concerns. Hopefully we'll get some answers finally. Or at least some good advice.

Thanks for checking in .

Lori

Good week

Nora had a good week. She has been really happy and smiley lately. She is doing lots of "babbling" with her ga's. This is a good step in maybe hopefully someday saying words. She has been doing great at school and is starting to drink out of "regular" cups. She has a special cup that has a normal lip but the fluid comes out very slowly. She is starting to really move. Not quite running but speed walking for sure.

We went to Nora's school for an ice cream social last week and Alex and Emma got to see her school. One of Emma's friends from school had a Halloween party on Sun. that we went to. Emma is a witch and Nora is a monkey this year.

I took Nora to a developmental behavioral pediatrician yesterday. I was hoping to get some advice on whether or not to have her evaluated for autism. What I got out of the meeting was we can probably wait a few months and give her time to progress. She has changed so much in the last 6 months that who knows how she'll be at 2 1/2. We also might wait until after her next MRI which will be around her 2nd bday in Feb. SO, I guess we wait a bit.

Another positive from the meeting was that he was very thorough in his background questions and we discussed all her medical details and he took a lot of time to spend looking at her physically. And he confirmed that I have been doing all the right things so far in taking steps to get her the best therapies etc. Which is nice b/c it seems like we are on this crazy train by ourselves and no one out there is telling us which way to go.

Other than that, we have just been having fun with Emma and our friends today at Lauren's bday party. Emma has a field trip with her class to the pumpkin farm tomorrow. That should be fun.

Thanks for checking in!
Lori

GaGa

Nora has a new "word" as of 3 days ago. Gaga! We haven't heard any consonant sounds until this. She is very vocal-we like to call her screamy mimi- but only yelling or vowel sounds. It is very encouraging that she is starting new sounds.

We saw an ABA (applied behavior analysis) therapist today to see if it might help Nora's development. I really liked the therapist but Nora is booked to the max right now with her school schedule, I don't know how we would fit in another thing. It may be something we will do in the future. We also have her meeting to update her goals at school tomorrow so we'll have a better idea of where she is developmentally. She is definitely making good progress.

We also had her poop analysed for lactose intolerance, which was negative. Hopefully we'll figure out what her poo problem is soon. If not, we'll have to go see a GI specialist. Grrr... another doctor to deal with.

We all enjoyed our visit from Mim. It went by way too fast. But we will be in NY for xmas!

Thanks for checking in.

Lori

Visit from Mim

It's been a while since I have posted. Nothing too exciting to tell. Mim is here for a visit. A whole weeks worth of mim-fun.

Nora is doing well. She took her last dose of Lamictal today to see if we can get her bm's to be regular and not diarrhea. Hopefully it will do the trick and we'll be back on track.

We have a meeting next week with an ABA (applied behavior analysis) specialist to see if she could work with Nora. I don't know if it will help, but it can't hurt. We'll also meet with her teachers on Thurs. to go over her goals for this year. Since the seizures were stopped, she has advanced quickly in so many areas that she is way past her goals from last year. She still needs the most work in communication skills. Still no pointing, signs, or words.

Some good news re: me- my colon is in good shape. I had a colonoscopy today for preventative measures (Bev was here so I thought it would be a good time). Healthy colons all around. Yahoo.

Hope all is well with everyone else. Thanks for checking in.

Lori