"But blessed is the one who trusts in the Lord, whose confidence is in him" ~Jeremiah 17:7~
Wow!! It has been forever since I have blogged. I don't have a lot of time these days to blog with school started back and a fourth baby coming around Thanksgiving. Talk about doctor appointments out the yin yang!!!
Yesterday was the ending of our 8 year journey. I am trying to be excited about this. But it didn't end how I thought it was going to end. I thought we would have a diagnosis in hand. A reason their bodies are reacting the way they do to certain things. A title that would tell us what their future holds. We didn't get any of that. We still face a future of the "unknown" and we live each day treating what we can and watching for new symptoms to rear their ugly heads.
The obvious has been tested for. Now we are looking at the other 1,000 plus "rare" mitochondrial disorders. Unfortunately this is where science is not caught up. There is no way to quickly or efficiently test for any of them. We could do a muscle biopsy, and we could fork out literally thousands more to figure this out with other tests. It may take us another ten years. But the fact is that the treatment would remain the same. So the question we had to ask ourselves is, "it is worth it?? Do we put them through that much more drama for an answer that won't change the treatment??"
So now we know three things for sure. They do have a carnitine deficiency They do have a mitochondrial disorder affecting the way their body transports energy, and this is genetic. So now that we have three semi stabilized kids our focus turns to Jacob. Then all of the anxieties come back that I felt with the others. It's a scary road but one we have traveled on many times before.
During the appointment the following "discoveries" were made. All three children have a low muscle mass. This is normal among kids with a Carnitine deficiency. Jaden was our worst. Also a small heart murmur was discovered in Jaden. They saw something not normal about Anna's eyes but would not discuss that with us, instead discussed it quietly among themselves. (so annoying!!) On the papers, that they handed to us at the end of the appointment, it said that "problems were found but were hidden from our view" (also, super annoying!!!)
At this point we feel, as parents, we have done all that we can do to help our children. The Doctors at Cincinnati have commended us on our determination to find an answer for these kids. They told us that most of the time Carnitine Deficiency's are misdiagnosed as a "virus" and ignored until it is too late. For that I Praise God. Only He knows that I don't have a fighting bone in my body. So any "push" I had came directly from Him.
So here we stand looking at a brick wall. It is surrounding us and I won't lie, it's disappointing. I mean we fought for 8 years for an answer and this is where it has taken us??? This can't be our "Promised Land" can it??? I envisioned it so much better than this. So we turn around, and we see how far God has brought us. He pushed us toward the country of Answers and once we got there, He carried us through the land of criticism . He walked with us through the valley of discouragement. He held our hands on the road of endless tests. He comforted us along the turns of the unknowns. He hugged us in the town of the slamming doors. He wiped our tears in the river of doubt. While walking up the mountain of anxiety He met us at the top with His peace. And when we entered the community of judgment and opinions He reminded us why we had to keep walking to get through it. My God has been faithful throughout this whole journey and has given us the wisdom to know where to turn and how to get to the next road to help us. Even though we stand up against a brick wall ,I know that I serve a God who can put a door in that wall at any time for us to walk through. So for now I will lift my hands and Praise the one who brought us here. I will continue to praise Him......even if this is where it ends.
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