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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, August 6, 2009

Hi Ho, Hi Ho Off to NIH We Go

Floyd and I will be leaving in the morning to go to NIH (National Institute of Health), to participate in our portion of the research of WAGR Syndrome (Wilms Tumor-Aniridia-Genitourinary-Retardation). Our flight leaves at 9:30AM. We will be undergoing testing at NiIH from Aug. 10th-14th. We are taking a couple of days to ourselves, before we have to check in at NIH. We desperately need a vacation alone. Just so we can relax and not have to make decisions about Timmy's care. The past couple of months Timmy has had ALOT of surgeries, Doc appointments and hospitalizations. Not to mention our Eye Doc appointments, which have also been out of town. We both feel overwhelmed, exhausted and stressed to the max! So even though our week away we will be poked, prodded, scanned and asked the same questions a million times, we are SOOOO looking forward to our time alone.

Timmy is being left in the best possible care of his Home Health Nurses. We have signed a HIPPA release and left instructions and contact information for us and Timmy's Docs, for the nurses and Timmy's Docs, in case of a medical emergency. By us signing the HIPPA release form, we have given a few of Timmy's nurses the right to speak to Timmy's Docs, seek medical attention if needed and make medical decisions as to any treatment which may be needed. Emily will be staying with MaaMaa and Papa or Aunt Angie and Cousin Tiffany. Zach will be with his dad.

Timmy will participate in his portion of the WAGR syndrome research in mid November. By Flody and I going before Timmy, we will be able to inform the Docs as to which tests Timmy will be able to participate in. This will also give the team a chance to schedule Timmy other appointments, in areas of concern (cardiology).

At the time of the post, Timmy's blood glucose levels have been well under control. The last time that we left Timmy for an extended period of time, his blood glucose levels went wacky. We had to swallow the cost and cut our vacation short by a day and a half. Immediately upon our return home, Timmy's blood glucose levels returned to perfect. Let's see what happend this time! Wanna wager any bets? Just remember Timmy's IS a MaMa's boy!

1 comment:

Michelle said...

I'll be praying you guys get some rest. We've done a week away, but its been a long time since the last one. I hope Timmy enjoys his time also. Our nurses have been really good with Emily but she is always very happy to see us when we return.

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