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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....

Thursday, November 5, 2009

Pulmonology Visit

Timmy had a Pulmonology visit today at UNC with Dr. Jessica Pittman. She was very pleased with just how well Timmy is doing, since the removal of his trach. Dr. Pittman took Timmy off of his Pulmocort nebulizer treatments. YAY!! No more daily breathing treatments. We are still able to give Xopenex and saline nebs as needed. She put Timmy on an antibotic "just because" Timmy has had some yellowish to tannish secretions coming out of his trach stoma. he antibotic is just a precaution, in case some kind of bug is trying to rear its ugly head. This way we can possibly stop it before it hits Timmy too hard. We discussed Timmy's sleep study results from the test in August. Timmy had a couple of centeral apnea episodes and a desaturation of less than 90% for a minute. Dr. Pittman doesn't feel that this is a big issue at this time, being that we aren't seeing any problems with sleep or breathing at home during the night. She looked into Timmy's ear (left). She removed the TONS of ear wax that had built up. And was able to then confirm that YES Timmy's left ear tube had most definately come out the night before. Soooo, we have a call into Dr. Z (ENT) to see what if anything he feels should be done. All in all, this was a great visit. Timmy measured 37+ inches tall and was roughly 36lbs. Timmy's next Pulmonology visit is in 6 months, unless he should get sick and need to be seen sooner.

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