The worst day of my life

Originally posted HERE

One year ago today was one of the worst days of my life. My baby was born... normally a good thing... but during his birth my wife was crippled. A few minutes before he was born I had a sudden chill go through my body, and I felt that something was wrong. There was no indication that anything was amiss. I just had this feeling.

When Jared was born, they immediately flew him to another hospital because he had a couple pounds of extra fluid in him. We had no warning. He had heart surgery 6 days later and was diagnosed with Noonans Syndrome. My wife couldn't even roll over in bed by herself. She was in a wheelchair for a month and then used a walker. During that same 24 hour period, my youngest boy took some poison and I stayed up all night with him. The previous week, I had taken him to the hospital twice because he was throwing up several times a day. A week or so later, my business took a belly flop and I ended up losing over $25,000. Yeah... Ouch!

It's been a year now and things have calmed down... but I'll never forget that fateful day. My wife had already been in the hospital for a month, which meant I was home with 4 little boys and working 20-hour days. The birth was supposed to be an end to our trials but it ended up compounding everything, especially since I had just recently lost my job and insurance. Jared is a sweetheart. He's now one years old, but he can't sit, crawl, or eat by himself. He has a wonderful smile, and he makes us laugh.

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).