Welcome

For starters I wanted to intorduce myself and tell you a little about me. I am a mother of 4 and all 4 of my children have had or stilll have something medical about them. So I am going to give you a little back ground on my kids and I hope to help others out there like me struggling with day to day.

Well for starters my first was born with what the doctors said is a genetic disorder and they put him in the category of Oral-facial digital Syndrome, but have now removed him from that category. He was born with a small chest cavity, small long bones, 2 toes half way webbed, a cleft lip, a high palate, oral problems, a hearing loss, a small jaw, an abnormal airway, cleft gums, and a huge head (the size of a 2 month old). The doctors told us that we would have a 1 in 4 chance of having another child like him. He has needed surgery from the time he was little until present and onward. He has had hernias that need surgery and tubes in his ears and the fixing of his mouth problems. Right now he is in surgery every 6 months to expand his chest cavity, and he just finished having his jaw expanded and is now in braces.

As for my second has a VSD heart mummer. Nothing that is going to need surgery but she is followed but a cardiologist.

Now my third dropped 3 months early into my pelvis and ended up being diagnosed with Craniosynostosis (is where (cranial sutures) between the skull bones closes too soon) at 2 months old. He needed to have head surgery when he was 3 months old to fix it and so far he is now the only one that doesn't need to be followed by and special doctors.

My fourth looks a lot like my first. Except he is slightly different in problems than my first. He has more oral problems than, but his chest cavity is a little larger than my oldest. He doesn't have the huge head just big. He also doesn't have the webbed toes. But everything else is exactly the same. Right now they are probably going to have their names sent to (if I remember right) UCLA to see if they can have their own syndrome. We are still waiting on that.

If you have any other questions please feel free to ask. Thanks.

I will keep a running tab of all the medical things that we go through.