Tuesday, January 26, 2010


I am taking Nora to the dentist tomorrow. A new dentist. We have a fabulous children's dentist but Nora won't let her into her mouth to see what's going on. She freaks. Like REALLY freaks. And Nora's teeth have been ground down by her bruxism. (teeth grinding) So I am really curious to see if the dentist at Children's Hospital will have to sedate her or something to get an exam. Should be fun. And she has a cough and slight fever today. Ug. Hopefully we wont' have to reschedule.

Only 2 more weeks until her 4th birthday. Big girl. I think at her 4 year well check up I am going to have her get her MMR vaccine finally. ( I did get her the H1N1 and seasonal flu shots and boosters this year.) I think she's ready. I think I'm ready. I still have concerns about getting her final booster of the DTaP. There is that huge WHAT IF? She can't go back to having seizures. That's not an option.

Alex will be traveling for the next few weeks. Denver, Munich, Japan...Wichita! fun stuff. He'll be out of town for his and Nora's birthdays. But he'll be back for her party. I am sure I will be going bonkers by the end of his trips.

Thanks for checking in

Wednesday, January 13, 2010

IEP-Individualized Education Program

Today I had Nora's IEP meeting. It went quite well. I got encouraging news from all therapists and teachers. She surpassed all of her communication goals from last year so now onto more advanced skills-same with fine/gross motor, social, adaptive and cognitive goals. She still qualifies in all areas but she has made great progress in them all as well.

Nora's school, the EEU, is such a great place for her and our family. I feel so at home there and the staff are all amazing. They love and care for Nora-she's been there for 3 years. Her current preschool teacher worked with her one on one when Nora was 2 so the difference we see since then is phenomenal. And she still has another year and a half to go. AND she could go there for K as well if the stars align.

It is so crazy that only 2 years ago, I would have bet you that Nora would never talk, or at least be able to converse about something meaningful. I really didn't think she'd make much progress. I hoped but I don't think I really believed it. I am so amazed at her progress.

She is sounding out/reading words. If I write C-A-T she'll sound out the individual sounds then blend them to form the word. She can count to 20 and count objects up to at least 10. She has over 500 words probably, can sing any song she's ever heard and in key, loves to imitate animal sounds, knows all her classmates' names, can tell you all of her extended family names, works her i-Touch like nobody's business, loves to meet new people and is pretty much happy all day long. Crazy.

We still don't know why she is delayed. She doesn't fit on the autism spectrum. She has numerous neurological abnormalities. Partial agenesis of the corpus callosum, arachnoid cysts, heterotopia, and she had a catastrophic seizure disorder, infantile spasms or West Syndrome. Combine all of these and you get severe cognitive delays, seizures, ADHD, behavior issues, eating issues, developmental delays, abnormal social behaviors, mild to severe mental retardation, and the list goes on. So no wonder she's got a few issues. But she is so darn cute you got to just squeeze her till she squirms.

Our little wonder girl. I can't believe she's going to be 4! In less than a month. Holy moly.

Thanks for checking in.