Wednesday, December 9, 2009

A Diagnosis

I always thought a diagnosis would bring me some comfort, in some way. Now I am not so sure. Up to this point I have been able to think, "Well, we probably have a mitochondrial disease, but it's not definite". You know, ignorance is bliss. I knew for sure that if we didn't get a diagnosis, I would be very frustrated because I would feel like we were right back at square one, knowing we had a problem but having no idea how to fix it. As of yesterday, we have a diagnosis, and while there are treatments available, there is no way to fix-it. So, am I comforted? No. Am I glad to know what we are dealing with? Yes. Is it going to be easy? Absolutely, no.

Clara has a mitochondrial myopathy (muscle disease). While we do not have the "specifics", as the genetic testing is not back, we have enough information for her neurologist to give her that diagnosis. I could go into details, but really, I just don't have the energy today. We do have a regimen of supplements that we are to start with her immediately. One is called Carnitor, to increase her levels of Carnitine and the other one is called CoQ10. Carnitor is covered with a prescription and the CoQ10 usually is not. There is only one brand she can take and they have put her on a high dosage. We are praying this will help her with her muscle pain and fatigue. We are also paying close attention for signs of blood sugar problems and ketones in her urine. These are VERY normal for mito kids. Their little bodies are just not efficient at making energy.

I believe there are blessings to be found in every situation, and without a doubt, so many things to be thankful for. I also believe God puts people in our lives for a reason. One of the biggest blessings right now is a relationship with a dear friend who has a son with degenerative diseases. It has been so great to talk with a Mom who understands the pain in my heart, something I never would have understood if I were not dealing with this. Another blessing is someone who I have not even met, yet, but have been put into contact with by a sweet college friend. This Mom has 5 children and a husband with mito diseases. I spoke with her on the phone last night for 5 hours. Those of you who know me KNOW I am not a phone talker, but I can tell you that the time flew by while my pencil flew all over my paper. Our doctors are so great at giving us technical information, but not always so great at telling how to manage the day-to-day. There is so much to be learned form experience. As we spoke, so many light bulbs went off for me. There have been so many things in her life that I keep thinking have to add up to something but was always told "no." Well...they do and they are all common things for mito kids: throwing up undigested food 24-48 hours after eating it, drooling, big heads, sugar cravings, eating issues at birth, crankiness, and the list goes on. And while no two people have the "same" mito disease, there can definitely be similarities. Her kids and Clara have many things in common. I feel like I am now a few steps ahead on understanding how to care for her after our talk. Thank You, Lord! There are no "formulas" and mito is not predictable, but I am armed with some knowledge, and that is good. On the flip-side of that coin, I have a little more knowledge, so now I have a lot more questions...this is going to be a process, for sure. It's a funny thing. The more I learn, the more I don't' know.

I feel, sometimes, like I am draining everyone asking for prayers for our family. I do believe that is what believers are supposed to do...we want to pray for you, too!! We do covet your prayers for Clara. We are still believing she can be healed completely. In the meantime, please pray for me and Jeff to communicate and for our marriage to stay strong as we juggle all of this "life stuff". More than anything, we want God's will. We have specific things we pray for, but right now, it is obvious He has His own timing. We don't ever want to pray outside of His will in any way. We know we are called to Life Action Ministries and while we are very anxious to get there, this is not His time apparently. Maybe because of Clara, maybe not, but it doesn't matter. We know He will get us there when He is ready. We have been praying about some financial concerns and we have great faith that He provides, but in some cases, that has not been His timing either. So, when and if you remember the Bryant family in prayer, please just pray His will. Honestly, we are tired and we are spent. We are hanging on to Him with every ounce that is left within us. We love Him SO very much and we know He is all-sufficient. His Grace is plentiful and He loves us. He has us in the palm of His hand. We are thankful for the many areas He has provided. We are thankful for wonderful friends and family who love us and pray for us...we love you, too! We are thankful for the Godly people that have been obedient to God's calling to support our ministry, in whatever way He has called you to do so. Thank You!! Mostly, we are thankful for JESUS and the CHRISTmas Season that was always meant to celebrate His birth.

That is all for now. We love you all!!


No comments:

Post a Comment