I have four children, they are all boys, ranging in age from four months to ten years. My two middle children, Connor,4, and Danny,2, have some special needs. I would tell you what their diagnosis is, but the doctors haven't been able to give them one. Connor and Danny have an unknown genetic disorder(at least that is what the doctors say right now). Right now, we are hoping that our youngest son doesn't have the same thing but only time will tell.
Connor was born prematurely at 35 weeks and spent the first month of his life in the NICU. When he came home, we thought the hardest part was over. Instead, we spent the next year trying to figure out why he was constantly coughing and breathing loudly. We thought it was because he had been on a ventilator for a week in the NICU. He had several episodes of pneumonia, which was diagnosed only by doing a chest x-ray because he never acted sick or ran a fever. Eventually, one of his doctors ordered an upper GI and the results were very surprising. The upper GI showed my son aspirating. One of the doctors told us he was very lucky because he had been silently aspirating, probably his whole life. He was put in the hospital immediately and was taken off oral feedings. He was a year old. He spent the next three months in the hospital while the doctors ran tests. Most tests came back ok, but his MRI showed that he had a slight Dandy Walker formation and extra fluid around his brain. They put a g-tube in when he was 14 months old.
Since then, Connor has had unexplained fevers, sensory integration problems, speech delays and developmental delays. Last week the genetics doctor took more blood to run some new genetic tests. I hope it will give us an answer.
I think that the most frustrating part of this whole thing is that our 2 year old has the same issue and I think the genetic doctor suspects that my four month old may have the same problem.
When I look at Connor it is hard to believe everything that he has been through because he is such a smart and lovable little boy. Connor is a very special little boy because no matter what is going on with him he is always happy.
