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I am the Momma of 8 children. Seven here on earth and 1 precious little Angel in Heaven. My children range in age from 2 months to 25 years. My 6 year old was born with a laundry list of complex medical conditions. He has Trisomy 21 (Down Syndrome), a rare brain malformation, which resulted from a mutation of the PAX-6 gene, bilateral anophthalmia, which means that he was born without any eyes, so he is totally blind. At the age of 2 1/2 months old he had to have a tracheostomy to help aid in his breathing. He is hearing impaired, with normal hearing in his left ear and has profound deafness in his right. At 3 1/2 years he had surgery to have a Mic-Key button placed in his stomach (feeding Tube), which is mainly used to give him his medications. He also has insulin dependant diabetes and wears an insulin pump, which gives him a continuous dose of insulin. Even with his many dis"abilities," including being globally developmentally delayed, he has accomplished more than anyone would have ever believed that he could. Join us in our journey living with a Dis"Abled" child....

Monday, October 20, 2008

School Days

Here are a couple of picture of Emily. They were take during that summer at her Preschool. Emily has been attending Preschool for the past 8 months. She LOVES going to Preschool so that she can play with her new friends.

Timmy started his very first day of Pre-K on September 8th. He LOVES going to school! His favorite part of the day is music and movement time and having his friends pull him around the playground while he rides in the fire truck.

When Timmy started school he was going only 3 times a week for half a day. We had an IEP meeting on October 8th to reassess Timmy's adjustment to school and so that the school therapists could add their goals that they had set for Timmy to the IEP. Timmy now attends school 3 times a week full time and the goal is to work him up to 5 days a week full time to prepare him for Kindergarten next year.

At the IEP meeting we discussed the safety of the swing that has been placed on the playground for Timmy to use. After re-inspecting the further adjustments that the physical therapist has made to the swing, I still feel that the swing is inapproperate for Timmy's use. So the next step is for the school to order a swing, which is more suitable to Timmy's needs. We have been informed that this may take some time to get into place. In my opinion, Timmy's safety is more important than a botched job.

We also discussed meal preparation of school lunch for Timmy. After looking more closely at the school lunch menu, the carbohydrates and sodium levels are too high for Timmy's diet and in my opinion any child's diet. It is amazing that 60% of the calories for the lunch comes from carbohydrates! And we question "why" kids are overweight, are being diagnosed with juvinille diabetes at a younger and younger age and why their blood pressure is so high. We have decided that for a more balanced diet, it is in Timmy's best interest, that we prepare his lunches at home and send them to school with him each day. This way we are sure that the consistency is right for Timmy as well, being that all of his foods have to be a smooth puree. The only issue that the school has to worry about is making sure that LORD Timmy's (a.k.a. TimmyLocks) food is kept at that "just right" warmth at lunch time

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