Thursday, June 08, 2006

Well this is my first post on here. I am sure I will bore a lot of people but thats alright. I really want to write to get things out when things go bad and when I feel stressed. I guess for the first blog I will tell you about our story and where we are right now.

Since this blog is about Tyler I will start with him. Tyler was born Dec. 28th 2004. he came 4 weeks early measuring at 6 lbs 2 oz. He was not breathing when he came out and so he had to be under oxygyn for 3 hours before he could come back to the normal nursery. His baby life was pretty normal. We had an ear infection here and there but thought nothing of it. Than Nov 05 came and he started to get real sick. From Nov-feb 06 he had Pnemonia, RSV, the flu twice, and Bronchitus. He was on lots of breathing treatments and had to give him a steroid 4 times a day. Finally he started to feel better and we havent been sick since. We got new insurance and so we had to get a new doctor. I called and called around and everyone I called was full and they were not taking any new patients. Finally I called this one practice that I had heard about but didnt think it was right for us. Well they had a spot open so off we went to meet this doctor. Our first visit we walked in and she kinda looked at us strange. We sat down with her and I told her about tylers breathing problems and when he was sick and everything and she excused herself and went into her office. She came back with this big book of genetic disorders. She said that Tyler might have a disease called Mucopolysaccharidosis. Or MPS as its shortened. She then told us that he has course facial features and thats what really set it off. And hes developementaly delayed and so she knew something was wrong with him. We had an appt to see a geneticist and to get some testing done. We had an xray and blood taken and they both came back negitive for MPS. Which is a GREAT thing!! Well now they know he has something, what he has no one knows. So thats where we are now. We are testing him for a bunch of different things and seeing what comes back. He is getting tested for 3 things right now. Hunters which is MPS2, Williams Syndrome, and Fragile X Syndrome. I will keep updating on our doctors appts and the results of the tests.


Lisa R said...

Feel a little better? I Think it works. Please keep me posted as to the results of all the testing. You'll get through this. :)

Aspen said...

I love it! I really think this will be so therapeutic for you. Good luck with the doctors this week. It is a daily battle, I know. Great post...keep it up!