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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....

Wednesday, April 15, 2009

ENT and Audiology results

I put in a call to Timmy's ENT, Dr. Zdanski and Pat Rouche. Dr. Zandski's nurse called me back. She stated that the Ph Probe test that was done on March showed only minimal reflux, which is normal being that Timmy had been off of his daily dose of Prevacid for almost a week. GI suggested the only thing that needed to be done was to continue Timmy's current dose of Prevacid and monitor him for signs of reflux. Timmy is scheduled for surgery on April 27th to have his adnoids and tonsils removed. We plan on asking Dr. Z to take a look to see if Timmy's esophagus still looks inflammed.

We spoke with Pat Rouche on April 7th when Timmy had his audiology appointment. We discussed a repeat ABR and the use of an FM trainer for Timmy. Mrs. Rouche returned my call as well. She spoke with Dr. Z and they both feel that the results from the ABR that was preformed in December 2008 was of a good quality and a repeat ABR isn't necessary at this time. Mrs. Rouche also feels that the use of a FM trainer for Timmy is a good idea, but she is against the use of the type that uses an earpiece. She feels that being the earpiece would block the sounds that would enter Timmy's "good" ear, this would hender him ability to learn. She also feels that by using the earpiece and Timmy not being able to tell us if the level is too loud, we may be over amphifying the sounds entering the "good." This in turn could do damage to him eardrum. Mrs. Rouche is willing to do what she can to help us get a field sound system, which is a speaker type FM trainer, placed in Timmy's kindergarten classroom for next year. I asked Mrs. Rouche if Timmy was a canidate for a cochlear implant. She said No. She went on to explain that being Timmy has normal hearing in his left ear and the way that the cochlear implant amphifies sound and the way a person hears the sound. This would cause a disturbance for Timmy and may be confusing to him and harder for his brain to process what he is actually hearing. We will continue to monitor Timmy's hearing and "try" the field sound system in school for next year to see how Timmy does. If the field sound system doesn't work for Timmy, we will discuss other options with Mrs. Rouche.

1 comment:

Anonymous said...

Timothy is a treasure from God, the Giver of every good and perfect gift. So is Josiah, who is probably having a ball in Heaven with our little Chloe. You and your family are in my prayers. Thanks for "being there" for my daughter Ruth, mother of Chloe and now carrying Hope. Thanks for your sweet response to my e-mail. God will see you through. . .but you already know that! Karen