Saturday, March 9, 2013

Trisomy 9

Trisomy Awareness Day 9, featuring Caden, with Trisomy 9p!

February 20, 2009 was suppose to be the happiest days of our lives we were welcoming our first child into the world. At 1:20 pm I gave birth to a 6 pound 14 ounce baby boy named Caden Jack whom appeared to be healthy. We struggled the first two days getting him to drink from a bottle. His pediatrician came into the room the day we were to leave the hospital and said she noticed several things about him that she wanted to talk about. We had no idea anything was wrong with our precious baby. She told us the reason he was having trouble drinking was because he had what appeared to be a cleft palate and a split uvula. If hearing that news was not hard enough she told us she noticed his facial features looked different to her and we need to contact a genetic doctor. My heart hit the floor and I broke into tears. I blamed myself everyday for his problems since I didn't know what had caused them.
When Caden was about two weeks old we went and seen a genetic doctor and counselor. They confirmed what the pediatrician had said in the hospital and they recommended genetic testing. Waiting for those results seemed like months. After a few weeks we went back for the results and the doctor told us he had what was called Trisomy 9p. We had never heard of such a thing. The questions kept coming what does this mean, will he live, will he be “normal”, what is Trisomy 9p? The doctor told us that at that time there was less than a hundred cases reported and they had never seen a case before. They promised they would do their best to help us understand as much as they could.
The one thing that was told to us was that most cases the children are extremely delayed with milestones if they are even reached. Caden did not sit up till he was about 10 months, never really crawled and walked around 18 months. At four years old he still does not talk, but he attempts to say several words. He had his cleft palate repaired and is trying so hard to vocalize more but until that happens he communicates through sign language. We are very proud to say that he has around 125 signs that he uses. He is on his second year of preschool which he attends two days a week. He loves the interaction with the other children. He is a little social butterfly!
We used to hate the extra chromosome that has affected our beautiful baby boy. Even though it causes him a lot of problems we wouldn't change who it has made him to be. No matter where he is he is always complimented on his infectious smile and how happy he is. He can brighten anyone’s day with just a little look and that smile! The good times with him outweigh all the problems he faces. We have made a whole new family that we would have never known if it wasn't for that extra chromosome. Its a family like no other.
Everyday might have a new heartache or have a new challenge but the joy he brings is so worth everything that is thrown at us. Caden is the biggest blessing that God could have given us extra chromosome and all!

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