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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 27, 2008

Thankful for little miracles

Happy Thanksgiving!

Wow, it is hard to believe that the year is almost over. A lot has happened this year that I am thankful for......

My Parents
They have been a God send in a pinch. Even though they have no idea as to how to help with Timmy's medical needs, they have been there to help care for Emily so that we coould take Timmy to doctor visits. And they put up with all of us in a small apartment for 6 months. It was a bit cramped and no one had any privacy, but we all made due.

Timmy's nurses
In my opinion Timmy has the BEST team of nurses that anyone could ask for. They all are very loving, caring and dedicated people. They all go over and beyond the call of duty to take care of Timmy. The nurses not only see to Timmy's medical needs, they also play the part of physical therapist, occupational therapist and speech therapist. There have been many times when we have been financially strapped for money and one of the nurses woould reach into their own pockets to purchase whatever is needed for the Timmy.

Timmy's health
So far Timmy has gone an entire year without a hospitalization! Yay!!!! We have taken on two new team members in the medical field. Dr. Michael Richard, orbital plastic surgeon, has replaced Dr. Dutton. And Dr. Zdanski ENT has replaced Dr. Gregory Hulka. Dr. Richard has taken Timmy into surgery twice so far and we have seen remarkable improvements on the growth of his orbits. Timmy has a sleep study scheduled for December 3rd and exploratory surgery with Dr. Zdanski on December 4th. Being that Timmy is a new patient of Dr. Zdanski's , he wants to take a look at Timmy's airway for himself and not just go on what is in Timmy's records from Dr. Hulka's office. Dr. Zdanski's goal is to "try" to get Timmy's trach taken out in the near future.

Timmy's test results for celiac disease came back negative. Timmy's growth like insulin hormone level also came back normal. His growth hormone was slightly below the lower side of normal. Being this level was so close to the low side of normal, we have opted at this time to hold off on giving Timmy any growth hormones at this time. We have been told that giving Timmy growth hormones with levels this close to normal "could" cause a chain reaction affect and cause Timmy to develop leukemia or some other form of cancer. We have increased the number of calories per day that Timmy gets to try to increase his weight and height. For the past few weeks Timmy's blood glucose levels have been very well controlled.

I am thankful that Zachary is such a good big brother to Emily. He plays and helps watch her while we are busy taking care of Timmy's needs or chores around the house. I'm proud of Zachary for making A's, B's and 2 C's on his most recent report card. Given the fact that he had to change schools soon after school started.

Emily, our mouse, what can I say? She is a typical, curious, hyperactive, helpful, loving 3 year old child. She loves chunks of cheese, watching T.v., going to preschool and helping to wash dishes. She's our CNA in training. She also likes to try to help take care of Timmy whenever possible.

And last, but not least CHOCOLATE!!!! It's a cure all for every and all situations......

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