2009 update
WOW I just realized that I never told you what happened in NY. AJ was not permitted to leave the state until after his first surgery. AJ had a VP shunt placed first. Then AJ could not tolerate the pressure release with not having the decompression so over Halloween AJ had his Posterior Fossa Decompression. Before surgery Dr. Bolognese said that he did not understand. From his testing, he was expecting a kid that was handicapped, mentally impaired, unable to communicate, ect. But AJ was talking and coloring and very smart. He said that AJ was compansating and who knows how long he will be able to do that. He said that the "seizures" that the daycare thought they saw was his cerebellum quivering and that ment that it wasn't going to last much longer. After decompression surgery Dr. Molerhat said that he was "not sure how AJ was alive" He said that everything was so tight in there that him surviving as long as he did was nothing but a miracle.
AJ's little sister, Alexa, was sick 6 months later and diagnosed at 18 months with Chiari 1 Malformation. She was a bad as AJ. During her Decompression they found that what was saving her was that she had no back to her C-1-2 and some part of the occipital bone that is to fuse at birth did not and things were able to buldge there. She has some neck instability and was in neck and back braces for about a year. She still has a slight instability but not much of a problem and should go away with growth. She was diagosed with extreme reflux into her lungs and had stomach surgery, Nissinfunduplication, and a Mickey button, feeding tube, placed. Alexa was found to not gain weight so we still have the Mickey button and a feeding pump. At 5 1/2 years old Alexa is just shy of 42 inches and weighs 33-34lbs if it is a good day. AJ is now 46inches and 49lbs.
Let's see... AJ had surgery end of Feb and then Beginning on March 2009. First was shunt revision and then he had a complication of his stomach swelling everytime he stood up. So he was taken back to the OR to check to see what the problem was. Nothing found. He now had surgery on Sept 24th, 2009 for a shunt revision and right and left septal fenistration and hole placed in the bottom of his 3rd ventricle. This was surgery number 13. It was also our first incision infection. We are still waiting to see if antibiotics are going to work or if he will need surgery to have his shunt externalized and placed in the ICU until the infection clears. I don't think this will need to be done.
AJ loves cub scouts. He loves the camping (which we are doing in the rain this weekend) and he loves all the activities. He is getting used to being in the hospital, but he hates the thought of having to go back. He is on a baseball team and just loves being a kid. He was started on Growth Hormone shots about 1 1/2 years ago and is now growing great!! His shunt was moved to his left side after his 10th surgery failed.
AJ is a happy, loving, and very smart kid that just wants to be as close to normal as he can. AJ can do anything he sets his mind to. He is awesome and loves his little sister like crazy.
posted by Carey Taylor @ 3:50 PM
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