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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, December 21, 2009

A Day Filled With Doc Visits

Today was a busy day filled with Doc visits for me and Timmy. I had a visit with my Cornea Specialists. Everything looks great. The Doc took me off of all of my glaucoma eye meds, steroid eye meds and 1 of my opthalmic antibotic eye medications. I now only have to take Vancomycin, which is an opthalmic maintance antibotic. I'm at a high risk for infection of the eye due to my Keratoprosthesis (artificial cornea and lens). I have a follow up appointment in January to check my eye pressure. If the eye pressure is high the Doc may have to reconsider putting me back on 1 of my glaucoma medications.

Timmy had an upper GI study with barium to check on his suspected reflux, due to a possible failure of his Nissen Fundoplacation. Over the past several months. we have seen Timmy spit up, he is able to burp, his ENT noticed some esophagus irriataion during one of Timmy's bronch surgeries and following meals Timmy tends to shove his fingers/hands soo far down his throat, as if he is trying to releive pain due to possible reflux. What do you think the study showed??? Absolutely Nothing Wrong! The radiologist even had Timmy swallow some of the barium while lying flat on his back. And still NOTHING! The Nissen is perfectly intact! The only explaination that the radiologist and GI Doc could give us is that If the pressure builds up to much in Timmy's stomach, it is possible for him to be able to burp and spit up. So now we sit and wait til Timmy's GI appointment in Feb. to see if there are other test that can be done to possibly get to the bottom of Timmy's GI problems. Because we aren't buying the explaination given us. Something is wrong somewhere, but where???

Timmy also had a urology visit. We discussed with the Urologist about having Timmy circumcised. When Timmy was alot younger he use to have reoccuring UTI's. He was put on a maintance antibotic to try to help prevent the reoccuring UTI's. At around age 2 Timmy's Endocrinologist gave him 4 months of testerone to help with his micro-"Winkie" (Just keeping things clean for any very young readers. Don't want any parents to start freaking out.). Timmy's "Winkie" is still small, but not as small as it once was. We felt that the reoccuring UTI's was due to Timmy's small "Winkie," but of course the Urologist wouldn't agree. Timmy has had 3-4 UTI's in 2009. So we are starting to see an unwanted pattern. We feel that being Timmy's foreskin is soo tight that we just aren't able to completely clean underneath it. Even though we do the best that we can and it appears to be clean. Of course the Urologist disagrees that the foreskin isn't too tight. Anyway by the end of the visit the Urologist agreed to try to schedule the circumcision in Jan. during Timmy's scheduled eye surgery. If this time isn't possible we will have to schedule a different surgery. Thank goodness this eye surgery isn't suppose to be so invasive and stressful. I can't imagine having both ends operated on at once!

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