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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, February 17, 2010

Two Doctors Appointments Today

On the road again. That is how it seems to be here lately. Taking Timmy to see a doctor about once or twice a week. Timmy is a very healthy child. So it would seem that he wouldn't have so many doctor visits. But somehow he does. I guess we should count our blessings that Timmy is so healthy and just start enjoying the looong car rides.

Timmy's medical team of doctors consists of Neurologist, orbital plastic surgeon, occularist, ENT, Endocrinologist, Cardi0logist, Urologist and Pulmonologist. These doctors are divided between our tow large state hospitals, Duke and UNC.

We left home around 9:30 for our 1st appointment at 12:30 with Endocrinology at UNC. Timmy has the WORLD'S GREATEST Endocrinologist!!!! Dr. Ali took time out of "his" busy schedule to make time to see Timmy. Most doctors would ask that you just schedule an appointment when they are seeing their patients in clinic. But Dr. Ali made time to see Timmy outside of scheduled clinic time.

Dr. Ali is very happy at how well we have been managing Timmy's blood glucose levels. Sshhhh, don't tell Timmy this, but we have him figured out to the point that we are able to keep his blood glucose levels pretty stable, between 70-170mg/dl. Now if Timmy should happen to hear anyone say that we have him figured out his body would surely find a way to throw a wrench into the mix to throw us off. So there were no insulin dosage changes necessary. Unfortunately Dr. Ali hadn't yet received the results to Timmy's blood work from Feb. 9th. As soon as he gets the results he will call us and let us know if we need to increase Timmy's thyroid medication. We are anxiously awaiting the results to Timmy's cholesterol level. Dad has taken it upon himself to make ALL of Timmy's meals each month from scratch, cutting out excessive preservatives, fats and cholesterol. Timmy has also been getting CorOmega 1x a day.  Due to the mutation in Timmy's PAX6 gene, he is predestine to have elevated cholesterol levels, which can not be controlled by diet or medications. We are hopeful that being Timmy NEVER plays by the rules of any Medical Game, we are able to beat the odds and CAN control his cholesterol at least a little with diet and medication.

Our 2nd appointment was with ENT. Dr. Z was very pleased at how well Timmy is doing since his trach was removed in July 09. We told him that Timmy very well with his 1st upper respiratory infection. We discussed what we would like him to do when he takes Timmy into surgery in early April to close the trach stoma. I asked if he would look at Timmy's upper and lower airway to make certain that everything looks good before he completely closes off the stoma. And look in Timmy's ears and clear out any wax and replace the ear tubes if necessary. Dr. Z wants another sleep study before surgery to make sure that Timmy isn't having any trouble while sleeping. So this has been scheduled for Tuesday, Feb. 23rd. Even though Timmy's trach stoma is still open, it is not open enough that Timmy is able to pass any air through the stoma. So pray that everything goes well with the sleep study so that we are able to proceed with the surgery to close the trach stoma.

After all was said and done, we made it back home a little before 7:00pm.

I can't believe it, but Timmy does NOT have any doctors appointments in March. Lets not tell Timmy because if he knew this he would find someone to go see. I can't remember this EVER happening before. What we do we with all of the extra time we will have on our hands???

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