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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....

Thursday, March 31, 2011

Hi-Ho, Hi-Ho Off To Grandma's They Go

 



The kids are suppose to start their Spring Break on Friday, April 1st. We decided to keep them out of school for 2 days, so that they could go to IL with Floyd to visit Grandma. Timmy hasn't been to visit Grandma, since January 2008.  He is so excited. And is looking forward to being able to visit with his cousins once again.

Being that Timmy is a special needs child and requires a great deal of extra items when travelling, food, diapers, diabetic supplies, medications. I always feel as though I'm forgetting to pack something. It isn't until he has been gone from home a few days before this feeling go away.

In the past when we have travelled with Timmy we packed all of the food that he would need for our entire trip. When Floyd took Nate to visit Grandma last month, it was brought to his attention by an Amtrek employee that the chef who prepares the on board meals could prepare all of Timmy's meals. A few days ago, Floyd had a long phone conversation with the Chef . The Chef felt very positive that he would be able to prepare Timmy's meals as he needs them. So Floyd agreed to let him try. Even though this service was put into place, being the well prepared mommy that I am, I went ahead and packed Timmy some food for his trip, just in case. If the Chef does get the consistancy of Timmy's meals correct, travelling with Timmy will be a breeze in the future. Our bags will be a lot lighter.

We travel by Amtrek ALOT. When travelling with Timmy on the airlines, the airport employees haven't been very acommidating or helpful. And getting Timmy through security with all of his necessary medications and supplies has been a NIGHTMARE!

Here are a couple of pictures of Timmy and Nate together today before they left for the train station. Nate LOVES his brother. Well, Timmy LOVES his little brother, especially when he is crying. Timmy thinks that Nate crying is hysterically funny. Maybe he knows that most of the time Nate's tears are crocodile tears. I swear sometimes it seems that these two have their own form of communication. Who knows. And they sure won't tell their secret.


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