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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....

Sunday, July 26, 2009

First Trip To The Beach

Here are a few pictures of Timmy's 1st. trip to the beach. He LOVED the sounds and the water. But HATED the sand, sea shells and the fact that his diaper got well. LOL.

The fact that Timmy no longer has a trach still hasn't sunk in yet for me. It took me hours after returning home to realize exactly what we had just done. Not just taking Timmy to the beach, but taking Timmy to the beach and only having to bring his jogging stroller, a beach towel and sun screen! Before a trip to the beach wasn't possible, because of the possibility of sand blowing into Timmy's trach or if we were to put him into the water, the possibility of water getting into the trach. I just feel so guilty that we live so close to the beach and Timmy wasn't able to go to enjoy himself. BUT now, WOW we REALLY can go to fun places with Timmy and he also be able to participate!

Before when we would travel anywhere with Timmy we would have to lug along 30 pounds of supplies. (Well, all of the needed things seemed to me to weigh that much!) Now a medium size school backpack can hold all of the needed supplies that we will need, like a change of clothes, diapers, wipes, a can of formula, extension tubing and syringe. Probably 10 pounds if that in weight to have to carry around now. WooHooo!

We have a "NEW" Normal and a "NEW" Timmy, LOOK OUT WORLD HERE WE COME!!!!!!!






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1 comment:

Michelle said...

Wow, how fun! I would love to be at the beach right now... Its pretty hot here.
Michelle & girls in WA

July 28, 2009 at 10:30 AM

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