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.
My prayers to you and your family as you move onto this next difficult step. Ana Maria is such a gorgeous child, and I enjoy reading your blog.ReplyDelete
I linked to it a couple of months ago from Amber Schmidt's blog, and noticed that we shared a couple of similarities. My 1 year old son also has mito, complex I and III...diagnosed by Dr. Shoffner through muscle biopsy. It is such a help to read about other families struggling with some of the same issues. I plan on being at the symposium this summer, so hopefully we could meet then. :)
i can imagine how your hearts must be pulled in a million different directions... i know that you and Shey have fought for Ana every step of the way and I know that you have made the right decision for her and for your family.ReplyDelete
Hugs and Prayers :)
does she have a MicKey GJ or a separate J tube? My son has a GJ and we've been dealing with it gushing stomach contents anytime he's on the pump. We talked to everyone and everyone said that it's just not possible. Well, today we went in and had it switched to a MicKey long tube instead of the button. He hasn't leaked since. If she has a separate J tube I know this won't help any, but figured I'd throw it out there in case she does have the GJ.ReplyDelete
She has a seperate j-tube, but thank you for trying to help.ReplyDelete
Keeping you guys in our prayers. I understand your feelings. Just like Mito, VACTERL is very misunderstood too. Just not enough information and not enough research so that doctors can understand. Its always a fight when it comes to getting the best care that we can for our children. In the end though its all worth it.ReplyDelete
Horray on that first loose tooth. Here's to many more for the tooth fairy. Just know those back molars are permanent though:>)LOL.
I just discovered your blog and will say prayers for your family and pray that you find comfort in your decisions.ReplyDelete
Many blessings to your family.
Emmy and Shey,ReplyDelete
Please know how moved I am by your recent decision. When I saw Josh on Sunday, I was surprised to see him back so soon. Then I spoke with you in the Cafe...I just wanted you to know I was speaking with Josh at the Oyster roast and I told him that I was just amazed by the strength that you have had. Ana is a very special girl. She's impacted my life greatly as well. I remember talking to Shey in AWANA and then calling you the next day. I remember Skyler coming up to me and having such genuine caring and insisting that I wear her band. He couldn't wait to tell me about her and I remember looking at him and I knew at that moment that he was a child of God's. I saw compassion in his face. I hadn't seen that kind of external caring from my son in far too long. Your lives intertwine with ours now and I'm grateful for it. Never, ever wonder why that little angel was born. She was born to touch lives and souls and she did in my family. Thank you Emmy and Shey for being the kind of parents most people are not. Ones that love their children enough to even let them go. It's a hard thing to do in life. You will be in my thoughts often. Thank you Ana for being the light of Jesus.
i just wanted to introduce myself. my 18 month old son was just diagnosed with mitochondrial disease. we are waiting for a muscle biopsy to determine what type he has. i am trying to reach out to other mothers who are more familiar with mito than myself.ReplyDelete
...ana maria is beautiful!!!