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
This is Nora's story... Nora was diagnosed with Infantile Spasms April 24, 2007. Infantile spasms is a rare seizure disorder. Nora was put on an anti seizure medication April 26th called ACTH. Her seizures were gone after 1 week of treatment and haven't been back. Nora also has partial agenesis of the corpus callosum and arachnoid cysts in her brain. For more info, check out the history section below.
Thursday, November 22, 2007
Sunday, November 18, 2007
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
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
Saturday, November 10, 2007
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
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
Thursday, November 1, 2007
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
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
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