God has a perfect plan and we are beginning to fit all of the pieces together. Cincinnati went well as far as getting Ana the care she needed while in a metabolic crisis. As far as the manometry, we didn't get answers to anything we didn't already know. We already knew Ana's gut motility had improved from the last manometry in 2007 because she tolerates feeds in her stomach... and has for almost a year now. The answer we were seeking is, "Why is the j-tube leaking constantly?" And to that question we may never have an answer. While we were in Cincinnati the doctors also discussed the idea that Ana's problems are behavioral. We are so tired of this theory and tired of constantly having to battle it. Our daughter has Mitochondrial Disease and that is what we know for sure. What path this disease will take... we do not know... for now things are progressively getting worse.
Shey and I together with the Lord's guidance have decided to avoid inpatient hospital care at all costs. Wednesday we will meet with the Palliative Care team here in the lowcountry. With this team and her doctors we will come up with a plan of treatment that will allow us to stay home during these episodes. As parents this is the hardest decision we have ever had to make, but we know that with the Lord's help we will make it through. This disease is progressing and we don't know how long Ana will be healthy enough to enjoy life as a 5 year old. It is time... her time to be the kid she is... as normal as possible... without hospitals in sight. This disease is so complicated and most doctors do not know how to treat... we hold nothing against any of them, they just do not understand it.
You are probably wondering... "what now?" Well, we will keep regularly scheduled "local" appointments. Doing so will ensure that "Kid's Path" (the Palliative Care Team) has the best care plan possible for Ana. We will also continue to raise awareness for Mitochondrial Disease. We will attend the annual UMDF symposium, we will attend the Foundation of Molecular Medicine symposiums, and we will make every effort to help get information about Mitochondrial Disease to all practicing doctors. We will love Ana every day. We will be a family again... Our other children will not have to worry anymore. They won't have to worry about being alone because we are with Ana in the hospital. They won't have to worry about when we are coming home.
Please keep our family in your prayers. Know that this decision did not come lightly. Do not be afraid to offer words of encouragement... knowing you are following Ana's story and praying for her continuously gives us great comfort.
The A.M.P. fundraiser will be May 9th at Burton Wells Park (Old) 64 Burton Wells Road Burton, SC 29906. The rain date will be May 23rd. This fundraiser will help cover Ana's medical expenses. Please continue to pray about this event and for those coordinating it.