Ana has Oxidative Phosphorylation Complex I Defect. Ana's defect is a primary Mitochondrial Disease. Ana's only chance for a cure is through God. Please consider praying for Ana on a daily basis.
Saturday, August 9, 2008
Cincy Day 3 & The Bad News...
Today started at 6:30AM. Our Bowel Management lecture began at 8:00AM followed by breakfast, an x-ray, and our much awaited appointment with Dr. Levitt. Dr. Levitt was everything we had anticipated he would be and more! He and Ana hit it off... she was so comfortable with him right from the start. Dr. L, Shey, and I discussed Ana's treatment options. We all came to an agreement on daily enemas for now. He feels that Ana should have the Malone Procedure... something we were hoping to avoid. Dr. L said that quality of life should be our top priority with her disease and prognosis. He said he would do it as soon as we are ready... tonight was her first Bowel Management enema (500mls) and it was very painful for her... after much consideration, the Malone Procedure can't come soon enough! We will complete the Bowel Management program and then we will make plans for a return trip for surgery. I was able to talk to Ana in depth about her options for rectal enemas vs. Malone enemas and she has decided she would rather the Malone. Please join us in prayer about the decisions we have to make. Pray that God be with her during this next week of Bowel Management.
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I am praying for continued strength for Ana and all of you. I know this has to be very hard for Ana and a difficult decision for you. You all continue to be in our prayers.
ReplyDeleteLove,Julie
Keeping you guys in our prayers. I have heard good things about the Malone though. I actually wish we could have this done and actually be done with it all ourselves. We have tried so many laxatives with Maggie and have had no real sucess with them. But Maggie is too young yet to have it done.
ReplyDeletewww.caringbridge.org/visit/margaretreed1