Monday, July 23, 2007

Jared has Noonan's Syndrome . . . officially

My baby boy, Jared, has Noonan's Syndrome. It's official. The test results finally came back and they discovered a mutation in the SOS1 gene, which has been known to be related to Noonan's Syndrome. The doctors were going to diagnose him with Noonan's Syndrome, regardless of the test results, but now we have test results to prove it as well. This might be helpful along the line with help from the Government for children with disabilities.

So we're happy the test came back positive.

He is doing well, except for the feedings. We have to feed him a lot from a tube in his nose and because he's becoming more active (he's 6 months old) he's starting to pull the tube out more and more. This morning it took us about 10 tries to put the tube back in and it was so sad because it hurts him every time. What happens is that he cries and coughs so hard that the tube comes out his mouth as we are putting it in.

He's a sweetheart. He's finally starting to smile and coo and play a little with toys. He'll need surgery on both eyes and a few more surgeries on his body by the end of the year. We're getting a band for his head to form his head properly (the insurance actually approved that, which is great because it was going to cost us $3000).

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