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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 19, 2009

Telling Time

Timmy hasn't been sleeping well lately. We have been trying to figure out why. He has been waking up around 2am and staying awake all day, without even taking a nap. So when bedtimes comes, we know that he is definately tired and sleepy. Bedtime for Timmy is around 9pm. Five hours of sleep, sometimes less, isn't enough for an adult, let alone a growing boy.
Timmy loves birds. He has this bird clock in his room, at the top of each hour the corresponding bird chirps off the hour. For the past few weeks the birds and the corresponding hour have been set wrong. We didn't think anything about the birds not lining up correctly with the correct hour. All that was important to us, was that the clock was set to the proper time. Dottie, one of Timmy's home health nurses pointed out that maybe, just maybe, Timmy isn't sleeping well, because the hour isn't corresponding to the proper bird. That maybe Timmy has gotten use to which bird sounds on the hour in which he is usually woken up and which bird sounds when he is put to bed. And having the wrong bird chirp at the incorrect hour is confusing him and making him think that it is time to wake up. Made sense to me. So Dottie reset the clock so that the correct bird chirps on the correct hour. Would you believe it, Timmy slept very well last night. So we shall see if this was the problem. If so, who says that a blind child, with a brain disorder can't learn to tell time?

1 comment:

ANewKindOfPerfect said...

That is awesome. Our kids are amazing. :)

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