January 23rd, 2012 
Admin Hello everyone. We are blending our Caringbridge.org website into this blog. Our family updates will be under Family News.
Daddy and Gr, before her stroke
I have talked about our medical issues and how the Lord has led us to sharing our journey before, Years of uncertainity are at rest
Also this past year has been an especially hard year. I had a stroke last spring and since then I have had several hospital stays and operations. Right now most of the attention has focused around my nutrition and I now have a Jtube (feeding tube that bypasses my stomach and goes into my small intestine.) My medical nightmare of a spring and summer pt.1 Â My medical nightmare of a spring and summer pt.2Â Leading to the worst point of the year, losing our precious baby Abigail.
This past year I (Heather) had had the worst disease progression. I will never be the same as I was this time last year. I am not the only person suffering.
The kids have fought off an endless series of infections. Some of the kids have experienced a large decrease in energy levels and mobility. Our neurologist and wheelchair specialist have all recommended that the kids get varying ability wheelchairs. While the kids need them and the drs have written reports, letters, and scripts for them it has not been that easy.
We have faced several insurance denials or such high prices we had to pay out that we were unable to pay the price. Gr needs her electric wheelchair desperately. The insurance company and the mobility company moved slow as molasses, by the time they told us that we had to pay several thousand dollars to get her wheelchair, and the state appeals board didn’t return our phone call it was too late. We had to change insurance companies.
Now we are faced with several wheelchair needs. My wheelchair is broken and the VA will be re-evaluating me for a manual (emergency backup) and an electric wheelchair this Monday. After seeing a PT in the ER last Monday the PT marked my need as emergency. Thank you Mr PT your detailed note and urgency to your note has helped! I am going through the VA for as much as possible but that can mean dealing with drs that have NO idea about mitochondrial disease. Please pray that the drs I encounter are kind and willing to be educated if they have not heard of mitochondrial disease.
Gr is having her wheelchair pushed through insurance once more.
Wheelchair similiar to what R will be getting.
R is now so affected in her legs that she is going to get a manual wheelchair according to her neurologist. G has his wheelchair and it will do for most of the year unless he has a growth spurt (thank you puberty and tall men in the family) M my littlest is going to get Gr’s old wheelchair and we are going to use colored duct tape and reupholster the arms to make it special for her. That leaves 2 people in our home that are not at least 40% dependant on a wheelchair Izzy and Hubby.
This spring we are going to have to find a contractor to put in a ramp for the front door. We no longer have a choice. We are also actively looking for a land that is flat to flattish that we can build a simple completely handicap capable home for our extraordinary family needs.
The last neurological appointment showed that the kids ALL need to get AFO to straighten their ankles. The muscles and ligaments holding their joints are so weak all their ankles are rolling in. For GR and me our hips are coming out of socket, incredibly painful. Starting to feel like a walking hardware store around here. Or it will by the end of the summer.
There has been the non-stop run of medical appointments that marches through our months. I tend to keep quiet about them unless something large comes up. The only other large and very disappointing thing that happened medically this past year was, G wants and could use a service dog. We are able and willing to train our dog. Unfortunately we have been turned down for puppies by several sources. Sadly the one thread that seems to run through most of them is they don’t want to give a puppy to a child or person that might die before the dog would naturally die. We were so close once I even had puppy pictures… G doesn’t even want to look anymore because his heart hurts too much. I am leaving whether or not G gets a service dog to the Lord.
There are continual struggles with the progressive nature of mito. One child is especially having issues with thinking and mental clarity. Another child’s body is struggling the hardest. Two children are staying pretty steady. Mito is unpredicatable and hard to see far into the future. What will be face this time next year? I have no idea. I don’t even know with certainity what a month or two from now will bring.
I hope that I have not forgotten too much. I’ll add it later if I have. This is the medical side of our life right now.
Don’t think that these medical storms have brought us to our knees. We have learned to rely on the Lord. We hope that by sharing our story with others we will encourage Christians to a stronger faith, setting their foundation in God before the storms of life arise. Helping those suffering through storms to know they are not alone. They are loved and cherished.
We encourage you to please pray for our healing, and for strength to carry on.
