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Hi
We have a WONDERFUL son named Akian! He was born full term and came home from the hospital as normal. 2 weeks later when he wasn't gaining weight they sent us to the hospital for evaluation. He had his 1st surgery 4 weeks later at 6 weeks old for larayngeal malacia. He was good and we thought that was it for Akian until January the next year when his acid reflux got out of control and had a nissen in Feb '07.
Then can a NUMEROUS amount of tests and for a while they all came back bad. He has a right bundle branch block in his heart. The pockets that holds the fluid in his brain are bigger. He had a swallow study done in April and we found that he aspirates EVERYTHING. So came the G-tube, during that surgery they found a larayngeal cleft that was repaired in Sept '07. He is quite a bit delayed developmently. He is not walking yet but started crawling at 20 months. He uses only a few words and is eating now pureed foods. He has 1 more surgery left to take extra tissue on his throut. He wears glasses and finally got his leg braces!
OVERALL, we LOVE him to absolute pieces. And wouldn't change our life for anything! He is the most amazing little guy! Words cannot even express!
2/9/09 - Akian is doing GREAT he started taking steps by himself on 2/8/09!!!! He has finally decided to use his walker when we are in public, so I think he might actually be walking by the time he starts school in the fall. He had his tonsils and adnoids removed 12/29/08, that was a rough recovery! He is doing extremely well. He is finally starting to act like a 2 year old little boy! His favorite thing to do is fight with his sister. He is still on mostly pureed foods, and they decided that what was supposed to be his last surgery he might not need! Good news all over the place!I will keep you all updated on this amazing little boy! Thanks for reading his story!
3/8/10 - Well I was right he was walking all by himeself with little assistance by the time school started! Couldn't be more proud! He is starting to chew his food so we are cutting back on what is pureed. He Is finally to sit through a book, as long as it's Dora or Phineas and Ferb and look at the pictures, and we are working on choice making and will choose between 2 items. He has made a lot of progress over the last year and couldn't be more proud of him!
Until next time!
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