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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, May 28, 2009

Is it really worth all of this!

We have all been counting down the days. This time Timmy only made it to day 6 before his right conformer came out, yet again! Darn his thumb sucking! In my opinion, the way Timmy sucks his thumb is what is causing the conformer to keep coming out. When Timmy sucks his thumb, he places his pointer finger up against his right eye lid and sometimes pushes. This of course dislodges the conformer and it comes out. Others seem to think that the reason that the conformer keeps coming out is because his right eye is rejecting the foreign body it the eye socket. If this was the case, each and everytime that a conformer or hydrogel had been placed it would have come out prematurely. But there has been instances where the conformer or hydrogels have stayed in place until replaced during surgery. I don't know. I have tried everyting I can come up with to "try" to break the thumb sucking obsession, but nothing has worked. I'm open to any and all ideas.....

Is it rreally worth it to keep putting Timmy through surgery after surgery and the pain and discomfort associated with having the conformers placed? What are we really accomplishing here? Is the potential of Timmy having blue or green eyes, what we want? What we want and is absolutely necessary for Timmy? Or is this what Timmy wants?

Even though Timmy can't verbally tell us what he thinks or wants in regards to having prosthetic eyes, maybe his pushing the conformer out, even though it is done during thumb sucking, is Timmy's way of telling us that he doesn't want eyes or that he could care less either way. I know the other morning I was talking to Timmy about how important it is that he finally give up the thumb sucking obsession. How cute he would be with green eyes IF we could get him to stop pushing the conformer out while sucking his thumb. With Timmy's vocalizations when I mentioned the "green eyes" it was like he was opposed to the idea of green eyes. Was it just the green eyes? Or was he trying to tell me that he doesn't want any eyes? I can't say for sure, because he chuckled, which is his way of saying "yes," when I mentioned that we could get him blue eyes if that is what he would prefer.

Is Timmy having eyes what we want? Yes, it would be nice to look at Timmy and see him with eyes, even though the eyes wouldn't be looking back. The eyes would help Timmy look more "normal," for lack of a better word. We wouldn't get a lot of nasty stares, remarks or questions from strangers, who are just being nosey. But in all honesty, this isn't a good reason for us to want Timmy to have eyes. Our decision shouldn't be based on what others think or feel. We will love Timmy unconditionally with or without prosthetic eyes. And as his parents and family, our thoughts are what really matter.

Some people feel that having prosthetic eyes are only for cosmetic purposes. We have also been told by several of Timmy's doctors that it is medically necessary for Timmy or most children to have prosthetic eyes. Wirhout eyes the bones in the face will not grow properly, thus causing the face to be deformed around the eye sockets and nose areas. This deformity could also lead to the nasal passages closing because of the way the face would grow without the eyes to support the bones in the upper portion of the face. If this is true, then absolutely yes, it is very important for Timmy to have prosthetic eyes. One day soon, we are very hopeful that he will be able to have his trach removed. We all feel that this could lead to bigger, better and exciting times for Timmy.

Dad put in a call to Dr. Richard to inform him that the conformer has come out. His nurse Toni is suppose to be getting back to us to let us know what Dr. Richard has decided to do, surgery soon to replace the conformer or wait 3 months until it is time to replace the conformer in the left eye.

So this saga continues along with the search for the perfect remedy for the thumb sucking obsession......

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