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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....

Saturday, April 25, 2009

Surgeries and Procedures

Floyd has an eye doctor visit on Thursday with Dr.'s McCuen and Dr. Afshari. Dr. McCuen is a retina specialist. When Floyd saw Dr. Afshari in March she referred Floyd to Dr. McCuen, before she would even consider doing his cataract removal surgery. Dr. Afshari wanted Dr. McCuen's opinion as to whether it would be safe for Floyd to undergo a cataract removal suregery and to make sure that Floyd's retinas are attached and healthy. Dr. McCuen ordered several extensive eye test. And from the results of these tests and his examination of Floyd's eyes, Dr. McCuen has agreed that it is in Floyd's best interest to have the cataract removal surgery. He also agreed that if a problem should arise that he is willing to step in and offer assistance as needed. Dr. Afshari upon reexamining Floyd had her secretary to go ahead and schedule Floyd's cataract removal surgery for May 19th. Pre-Op is scheduled for May 18th.

Boy this is gonna be a busy week of eye surgeries. Timmy's surgery to replace his eye conformers is scheduled for May 22nd. with Pre-op on May 21st.

Timmy had his abdominal MRI yesterday. We will pick up a copy of the MRI and hopefully a full report on Monday April 27th. We have been waiting for this MRI to be scheduled since late December. We are really curious to know if what the Dr.'s suspect about Timmy's pancreas being malformed is correct. The Dr.'s seem to "think" that if the pancreas is malformed, this is the cause of Timmy's diabetes. Timmy has Down Syndrome and he has none of the typical malformation of his heart, kidneys, and other organs like most children with Down's. So we are anxiously awaiting the results!

Timmy has his 2nd of hopefully 3 surgeries that will be needed to remove his trach. On Monday, we aren't exactly sure what Dr. Zdanski will be doing. Dr. Zdanski was waiting on the results of the PH probe test that Timmy had on March 26th, before he would make any final decisions. The PH probe results showed minimal reflux, without his medications. So hopefully Dr. Z will remove both the tonsils and adnoids or one of the above and laser the airway during this surgery. And in a month follow up with the removal of the other and do a scope to check to make sure everything is healing properly. I feel that if both the tonsils and adnoids are removed at the same time, this may be very stressful for Timmy. But on the other hand, Timmy is a very strong and tough little boy. He has been able to handle much more and came out unscaved. So we will just have to see what Monday has to offer.

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