Mary made history

[Googsmom aka Jennifer]

First of all Mary made it fine through the surgery ;D

Remember last time the doc's were saying this was a tramitic bone cist. Well come to find out through this that the other, it is not. They have no idea what it is or why it came back, nothing. Her dad and I had to sign a bunch of concent forms for pictures and so they could have a conference about her.

Doc's words were..." your daughter is a fanominon (fa-nom-in-non) and no one knows what this is. None of my collegues have ever seen such a thing and were making out best guess as to how to fix it"

Great

So before we even left the hospital they had a conference schedualed (week of the July 4th) and every maxilary surgeon will be there from 6 states he says. They will be going over all the stuff and it will have to be named. Her case is #1 ever in the written history. They all are at a loss. I was wondering what was taking so long in the op room. They were emailing pics and stuff all over the place to see if someone, anyone could give them an anwser. (yes, I was freeking out. Got told to shut up and quit yelling down the hall )

There is no ruff housing, no sports, and Pray she never gets bonked in the face. Her jaw will break at the slightest bump. Doc said he almost broke it durring surgery on accident

So, not the way I would have wanted for sure, but my girl made the medical journal of maxilary surgeons

[laurasmom]

What a roller coaster ride for you, and for Mary.
I will be praying she heals well, and that there is a doc somewhere that says "I know what that is, and this is what to do".

Sharon

[Googsmom aka Jennifer]

Thx Sharon {{{HUGS}}}} I've been searching most of the day. She has really good insurance through her other mom's work so I can take her to other places if need be. I just have a hard time gripping that this doc has no idea what or why it came back or what is going on. He is the best of the best at OHSU. I will find and anwser and hopefully someone w/ a cure as well.

Thats what Momma's do!!

In other news Brooker is doing much better w/ the Pneumonia. She still has a cough so Dr Tami gave her a new puffer thing. Lungs sounded good though when we went in on friday for a check up. She's a trooper

[laurasmom]

Glad to hear Brooke is better! The cough does take awhile to go away, it was one of those things that gradually got better, but so gradual it took me awhile to realize that it was gone.

Have a great Sunday!
Sharon

[kg91207]

Whoa!!! That is wild. I'm glad she made it through the surgery.

I'm glad the pneumonia is just about gone too. Kaelyn and I are still battling our sinus infections. It seems like the pressure and pain is never going to go away!!

[Chris too]

I'm glad to hear about Brook's pneumonia getting better, sad for poor Mary. Remind her to not mouth off to bullies until they get her fixed up I'll be praying for answers - especially that you find out that she's really not #1, but rather #4, 5, or 6, and that they know how to fix it. {{{hugs}}}

[Googsmom aka Jennifer]

Thank everyone. I've been in contact w/ a few doc's and sent them info to Mary's doc. So far I know there are cases of this kind of cist. What they are trying to figure out is why it's in her jaw. It always has shown up in the knees in other patients. She can't be the only 1 I keep telling myself. There is someone, somewhere who will know something!! I just have to find them