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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....

Monday, April 12, 2010

Now That One Door Has Completely Closed....

It has been 8 1>2 months since Timmy had his trach removed. On Friday, April 9th, Timmy had surgery to completely close his trach stoma, ear tubes replaced and the ENT scoped his airway to make sure that everything looked good. Surgery went well. It was a bit more advasive than we thought that it would be. The ENT surgeon had to remove scar tissue from Timmy;s airway in or to place stiches for the stoma closure. Also a rubber band drain had to placed to help any trapped air excape and for drainage to come out. So Timmy had to be hospitalized overnight for observation just in case he may have developed a collapsed lung.
Today was Timmy;s 1st day back to school following his 3 week Easter break. He seems to be doing well, except for some minor pain. He also refuses to cough deeply enough to completely clear his airway. So this is a sign also that he is still in a bit of pain. Timmy is a tough little guy. He has endured so much over the past 6 years of his life. and bounced back pretty fast. I;m hopeful that with all of the attention and love that he receives from home, his home care nurses, his friends and teachers at school, he will bounce back fast from this surgery as well.
Timmy had been scheduled to have surgery later this week to circumcise him and descend his testicles. After some though, consideration and consulting Timmy's ENT surgeon, we have made the decision to pospone the Urology surgery for about 2 months, to give Timmy;s airway time to completely heal.
In this family, we never do anything without a challenge. Timmy should be ready for surgery around the time that Little Nathaniel is due to be born. So our challenge will be to schedule Timmy;s surgery, any post-op visits and my C-section in a timely manner. Oh yeah, Emily is suppose to go visit with Grandma in Chicago for a month beginning the 2nd week of June. So we also will have to figure out in the travel time for Floyd and Emily to get to Chicago and Floyd;s return trip home. Think this is enough? Oh no. There will also be 1-2 OB visits for me that we will have to find somewhere to squeeze in our ever building schedule. Are you bored? Come spend a month with us and travel to all of our appointments and I;ll bet you after that month you won;t complain about being bored again.
On a brighter side, now that the door in our journey with Timmy with a trach has completely closed I;m sure that another door will open offering Timmy many adventures and life experiences which we have had to put on hold due to the trach..
No more trumpeting Elephants. What? you may be asking. This is something that all of us especially Timmy is going to miss. Before the surgery to completely close the trach stoma, if>when Timmy would push air up through the trach stoma it would make a noise that sounded like a trumpeting elephant. Timmy would spend many, many, many minutes a day just making this noise, which would send him into fits of hysterical laughter. And when Timmy laughs his laughter is so contageous that if you around him there is no way that you will be able to keep from laughing along with him.
So now comes his and our new adventure in trying to teach Timmy how to make the trumpeting elephant sound just by using his mouth. iF HE DOESN;T LEARN HOW TO DO THIS i;M SURE THAT HE WILL FIND A NEW NOISE PAST-TIME TO KEEP US ALL ENTERTAINED. i;M LOOKING FORWARD TO THIS.....

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