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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, November 3, 2008

Post Surgery Update

Some picture of Emily on Halloween. Poor Timmy had eye surgery on Halloween Day and didn't feel up to going Trick-or Treating.

Timmy had the eye comformers in his eyes replaced on Friday. Surgery went very well. Timmy had some growth in both eye sockets. This is very good news! Timmy has hydrogel expanders in each of his eye sockets at this time. Dr. Richard was able to get the smallest size of the hydrogel in Timmy's left eye socket and the medium size in the right. There are three different sizes of comformers/hydrogels that are used to expand the eye sockets. The difference between the hydrogel and comformer is, the hydrogel is made of a silicone type substance, which absorbs the eyes natural secretions, thus this causes the hydrogel to expand and stretch the eye socket. A comformer is s hard piece of plastic, which is wedged in the eye socket to help maintain growth. Dr. Richard chose to use the hydrogels this time to give Timmy's eye sockets a rest from the plastic comformers. Both of Timmy's eyes are sutured shut to help to hold the hydrogels in place. The sutures are on the inside of the eyelids. Dr. Richard did a FANTASTIC job with placing the hydrogels! Honestly, Timmy's eyes have NEVER looked this good following previous surgeries with his "old" occular plastic surgeon.

Timmy was in quite a bit of pain. This is to be expected following any surgery. Also the hydrogels can expand to their full potential within a few hours or days. Timmy's pain was easily managed with Tylenol and Motrin alternating the doses every 3 hours. Timmy was also given a dose of his Valium, which helped to further relax him. I (mom) figure that the Valium helped only because Timmy still had some anesthesia in his system, a dose of Tylenol and a dose of Motrin. Timmy CAN'T take Valium, because it makes him fly higher than a kite!!!!

What do I mean by this? Well the very first time that Timmy was given a dose of Valium, which was suppose to help him relax and sleep. Timmy stayed up ALL NIGHT in a fit of hysterical laughter! Now comes the plot to kill Dadddy (Floyd)!

Timmy woke up Friday night early Saturday morning, to be exact 1:00am, just as Floyd was heading to bed. What sleep aid did Floyd choose to try to get Timmy back to sleep???? Oh no not the ole standard miracle sleep aid, Zanaflex. Not the one which would have had Timmy knocked out in 10 minutes or less. Oooh Noooo! He gave Timmy a dose of Valium! Wanna guess who had to get up and stay up with Timmy, so that he didn't use his hands to hit at his eyes, while in his fit of hysterical laughter??? ME (mom)! Guess what Dad (Floyd) did? He went to bed and went to sleep! I was up with Timmy until well after 4:00am! Even though I was exhausted, it was funny to watch Timmy in his fit of hysterical laughter. At 4:00am I couldn't stay awake any longer. I had to get some sleep. I had been awake off and on since 1:22am Friday morning. I was so scared that we might over sleep and miss our scheduled surgery time. We had to get up at 4:30am so that we could get dressed and have Timmy to Duke by 6:00am. I hated to do so, but I put Timmy's arm splints on and put him in his bed. I don't like doing this because he still tries to self stimulate and can hit himself in the eye even with the arm splints on. I was able to rest with one ear open until 7:00am at which time PaPa and Emily came to the door and woke us up.

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