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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, October 25, 2008

A Busy Week Ahead

Timmy has a busy week ahead, with Pre-Op and two surgeries. Tomorrow afternoon, Sunday we will be leaving to go to Chapel Hill. Timmy has to be at UNC at 6:30am Monday morning. So we will stay in a hotel Sunday night. Monday's surgery is with the "new" ENT, Dr. Z. Timmy will be having ear tubes replaced, because ear wax is completely blocking the ones currently in his ears. Also there is fluid behind Timmy's eardrums. The new tubes will help to drain the fluid and help improve Timmy's hearing. We are all looking forward to the surgery being over, so that Timmy can start wearing his hearing aids once again. We are all hopeful that once Timmy starts wearing his hearing aids, his vocabulary will grow and words will be pronounced better, so that others can understand what Timmy is trying to say. We brought Dr. Z on board as Timmy's "new" ENT in September. Timmy's "old" ENT didn't want to be aggressive when it came to Timmy's hearing issues. He also wouldn't make any decisions alone, when it came to the management and preparations to try to remove Timmy's trach. The "old" ENT would pass the buck to Timmy's Pulmonologist, who in turn would toss the ball back to the "old" ENT, so nothing productive was being accomplished. Also the Audiologist, who works along side the "old" ENT didn't want to do anything to help improve Timmy's hearing. We requested on several ocasions for a repeat ABR (Audiotory Brainstem Response) test, to reassess Timmy's hearing following ongoing ear infections and we were told another ABR wasn't necessary. We also brought a "new" Audiologist on board, in September. Timmy is scheduled for a ABR on December 4th. Following the ABR, we will discuss with the Audiologist, the results of the ABR and options for new hearing aids for Timmy.

On Thursday, Timmy has a Pre-Op visit. On Friday, Timmy is scheduled for surgery to have his eye comformers changed/replaced. The comformers are used to stretch the eye sockets, to prepare them for prosthetic eyes in the future. Dr. Richard at Duke will be preforming the surgery. We changed Occular Plastic surgeons, because Dr. Dutton at UNC, didn't want to be aggressive and change out the comformers in a timely manner. The comformers are suppose to be replaced every three to four months. In July when the comformers should have been replaced, Dr. Dutton wanted to wait until sometime in November. In July, Timmy's eyes were secreting amber colored fluid. From what we have been told, this is a definate sign that the body is starting to reject the comformers and this is a sign that it is time for the comformers to be replaced.

Timmy has never had two surgeries scheduled so close together before. Being that each surgery is a simple procedure. Neither surgery should last no longer than 30-40 minutes. And being that Timmy hasn't had any complications arise during or after previous surgeries, he should be fine. Pain and recovery time should be short. With the pain being managed with Tylenol or Advil.

I'll try to post a post surgery update on Timmy Monday evening.

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