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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....

Friday, January 22, 2010

Persistance or Fate

Today Timmy was suppose to have a double surgical procedure. He was suppose to have eye surgery to remove the sutures and glue from his eyelids, which was helping to hold the conformers in place. Being Mr. Timmy's favorite pass time was poking the conformers out. And to replace the conformers with a larger size. The eye surgery went well. We have a surprise post coming early next week.

The second surgery was suppose to be for circumcision. This surgery didn't take place. Fate has FINALLY guided us to a Urologist whio is willing to help Timmy with his best interest at heart.

When Timmy was born, he had a micro-penis and his testicles are undescended. Shortly following his birth, Timmy started having frequent UTI's. At a little over a year of age Timmy's Nephrologist (kidney Doc) placed him on a daily dose of an antibotic to try to help prevent the reoccuring UTI's/ This daily dose worked for a short while. But as Timmy's body adjusted to the antibotic, it stopped doing its job. So we had to switch between 2 different antibotics every couple of months to try to prevent Timmy's body from becoming use to the drugs.

Shortly after Timmy turned 2 years, I was speaking with a mother who has a son, who had some of the same issues that Timmy was having. She suggested that we speak with Timmy's Endocrinologist about a monthly dose of Testerone to help Timmy's "Manhood" grow, which in turn "may" help in preventing the reoccuring UTI's. Timmy's Endocrinologist agreed to the monthly Testerone injections. Timmy received 4 monthly injections of Testerone, which did help his "Manhood" to grow. But the frequesn UTI's didn't go away.

We decided that being Timmy's "Manhood" was now a bit larger, a circumcision might be possible and solve the problem of the UTI's. So we went on a search for a Urologist, who would be willing to descend Timmy's testicles and to circumcise him.

We searched for 3 years with absolutely no success. Each Pediatric Urologist that we spoke with felt that a circumcision wouldn't solve the problem with the frequent UTI's. And even though there is a very slight risk of cancer if Timmy's testicles aren't descended, that the chances are sooo slim that doing the surgery was unnecessary. At the age of 4 years, when Timmy hadn't had a UTI for quite sometime the Urologist felt that it would be safe to take him off of the daily dose of his preventitive antibotic. The Urologist felt that Timmy's UTI's were something that he just needed to outgrow.

Late last summer Timmy started having UTI's once again. One maybe every few months. Nothing as frequent as they once were. In December we approached Timmy's Urologist once again and asked him to PLEASE consider preforming a circumcision. He Finally agreed to do the circumcision, but still felt that descending the testicles was unnecessary.

Persistance or Fate Finally came upon us. Timmy's Urologist was unavailable to preform the circumcision on surgery day, but his associate agreed.

When Sherry Ross came out from surgery and stated that she did not do the circumcision, Tears filled my eyes. I immediately felt like we had been let down once again. This is a procedure that Timmy desperately needs. Dr. Ross went on to explain that she didn't do the circumcision because upon examining Timmy first, she noticed that his testicles needed to be descended. And instead of putting him through surgery twice she felt that it best to wait and do both procedures at the same time. It took everything in my body to hold back my tears. I was so releived that we had finally found a Doctor who was willing to help, who was putting Timmy's health and best interest at heart and who didn't seem to even think twice about Timmy's multiple complex medical conditions. Dr. Ross gave us her business card and asked us to schedule a clinic appointment at our earliest convience so that we all could discuss Timmy's necessary surgery.

We have an appointment to meet with Dr. Ross on Feb. 4th. Hopefully Timmy can get this surgery sometime in early March or April.

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