Thursday, June 5, 2008

Pray for me please

I wanted to give a little background info about my problem and why and when it started. **************************************************************************************
I was born with a very rare condition called VATERS Syndrome. Each letter stands for a different part or system in my body that either doesn't function normally or has abnormalities. It is so rare that I have never met aanyone else with it, and it is not in the medical textbooks, so alot of doctors have never heard of it. My main problem is with my stomach and esopogaus. When I was born my stomach and esopogaus were not connected (part of the VATERS), I had surgery a few days after birth to connect them. The connection lasted until 5 years ago, so I had surgery to connect them once again. Well, some time after the second surgery, I started developing problems swallowing.At the time ( and still today) the only known treatment to cure all is a transplant surgery where the esopogaus is removed and the part of the colon is cut out and made into the new esopogaus. Well, my mom knew there had to be another option, so after doing some Dr. searching and meeting with some top Dr.'s in Texas, we were referred to a top Dr. in St. Louis. in January of 2006, we went to St. Louis, and met with the Dr., expecting the worse: nothing to be done, but surgery. Instead we got the best news possible: all I needed was botox. 4 shots of botox, at exact places in my esopogaus, and that's it. The botox could last anywhere between a few weeks to 5 years. I got 2 years out of it. But, this time around my espogaus has stopped working with much greater power and pain then the first time around. Very little is going down, and I am in much more pain than the first time around. I have already spent 6 days in the hospital on IV nutrition, and I know that there are many more hospital days to come. I am starting to have alot of second thoughts, and fears, and alot of emotions surrounding this, and the sub-layers of the scope of all this.
Please pray for strength, peace, and the pain to go away.
All for now,

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