IEP meeting today

Today was another IEP meeting to discuss changing Sadie's label prior to her 7th birthday.  In the summer of 2007, Sadie was found eligible for special education services and was labeled developmentally delayed.  In our school district, children must have a label change by their 7th birthday to Intellectual Disability, Other Health Impaired, Developmental Disability, etc.  All of that requires some or all of the following,  updated social history, psychological evaluation (IQ), adaptive/behavior, etc.  We strongly feel at this point, we are not ready to "label" her ID, because we have many concerns with the implications of her IQ being in her record.  Let me ask you a question, would you want your child's teacher or other teachers to know their IQ? Do you think it would affect how they are treated or educated? Do you want anyone to know your IQ?  Would you post it on facebook?

Reminds me when she first got baby teeth

Heehee... Sadie has 3 adult front teeth and 2 adult molars and 8 baby molars left in her mouth. As strange as her teeth look now, I think they are beautiful and so much better than all the super crowded 8 teeth that were there.
I spoke to the cardiologist today and her ASD hole is still 4mm and VSD hole is a few mm. He said not large enough to repair in surgery. However he was very clear that she should have a follow up EKG and echo on her heart in 9-12 months. Should be done under sedation again too. Ugh. But good news none the less that se doesn't need surgery. Yay!!!!

"Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid" ~ Albert Einstein

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Photos to go with the last post

Under Anesthesia

Sadie had 8 baby teeth removed this morning under general anesthesia. In addition, the two 6 year molars that came in defective due to hypoplasia (missing enamel) were saved and could be filled rather than crowned. Initially only 4 baby teeth were supposed to be pulled , but her mouth was just too crowded. We are so happy with the care and attention from her dentist and also the children's hospital team has been great.
While she was under, she also had a heart echo and blood drawn for a CBC, thyroid autoimmunity baseline, and food sensitivity.
We will be able to see her soon, after the heart echo is finished and she's taken to recovery.
Hoping for a restful afternoon and comfort for her little gums that are stitched up.

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Broccoli

Raw Broccoli:Sadie's item of the day to carry around.

Rheumatology appointment

Last week we took Sadie to see her 11th doctor, a Rheumatologist. We have had concerns about her lack of circulation and also her super red hands and purple feet since she was a baby. When she is sitting in certain positions, her feet would turn VERY purple, but especially when we would hold her in a certain position. Her casts from 4 days old up till her surgery at 7 weeks made it worse. We notice her hands the most when she has a fever or she is exposed to more extreme temperatures. Finally after asking all the doctors with no known reason, it was recommended that we rule out Raynauds. After a long overview of Sadie's medical background, the doctor thoroughly examined her. She most confidently believed that Sadie does NOT have Raynauds. However, she explained in cases like Sadie's when kids have hypotonia (low muscle tone) that they usually have slow vessels and blood flow. She called it Vaso Motor Instability or blood pooling in the fingers and toes mostly due to low muscle tone related to blood flow and vessels. She also believed the color change in her hands during temperature change are related her Thermal Regulation or her body can't regulate itself in higher or lower temperatures. This pretty much explains her cold hands and feet. But it is scary when it's hot outside or very cold. Her little body has trouble adjusting. Since Sadie is having dental and a heart echo under anesthesia in February, she ordered a long list of blood work to get a baseline for her levels of autoimmunity, CBC, and thyroid.

New shirt and soooo cute

Sadie's all ready for school this morning in her cute new shirt!