April 13, 2012

A Not-So-Good Doctor's Appointment With A Pretty Good Ending --- I Think

I took Daron to see his neurologist on April 12th in Ann Arbor. The appointment was to discuss the possibility of Daron ending his Tysabri infusions. Daron has had to go to the Ann Arbor VA once every 4 weeks to have the IV infusion of this medication. It has helped keep the flares at bay & it apparently healed the newest lesions (that just means that it repaired the lesions on the nerves in his brain that had not had a chance of destroying the entire nerve).

Anyway, here is the conclusion of the appointment: The doctor strongly advised us that Daron has to stay on the Tysabri or he will have a massive flare that could possibly leave him permanently bed bound & take away the last bit of ability he has in his arms & legs. It could possibly even shorten his life.

Not something you want to hear. Personally, I was hoping that Daron would be able to come off the Tysabri & start a new drug. But, I don't want to do anything that will risk his health & well-being either. The doctor did make sure to really point out to Daron that this drug is Not a cure & it will Not reverse the damage that was done from his flare in January 2009. With that said, the only thing it will continue to do is keep new flares from happening. In the meantime, the damage done by his flare in January 2009 will continue to take it's toll on Daron's body. That flare damaged many nerves in his brain & therefore took away his ability to walk with stability. He has muscular strength, but his legs are not going to be able to stabilize him & allow him to walk.

After talking with the doctor, I realized that the January 2009 flare did a lot more damage then I had first thought. I mean, I have been blaming the Tysabri for making Daron's health go downhill. That wasn't the case at all. It was the flare that started the snowball effect & now there is no reversing it. I hate trying to look back & say "what if I had just forced Daron into seeing the neurologist when he had that flare? Would he still have gotten to this point? or would he be better & at home?" I can't look back though. Everything that happened back in 2009 happened for a reason. I know that because I know that my God won't lead my family through something that we cannot handle. I trust that everything that has happened in my family's life has been for a greater good. I also know that I will never understand what the greater good is this side of heaven - & when I get to heaven it won't matter enough to ask about it.

So, while I am not thrilled with the outcome of the appointment or the things that I had to hear; I am glad that I will get to have my husband around for a while longer. Now I just have to continue praying that God will open Daron's eyes & allow him to see the good around him. He is so focused on the negative side of being in a nursing facility - out of the home, away from family, miserable, etc - that he is missing out on the wonderful opportunity that he has to be a light in Laurels of Kent. I just continue to pray everyday that God's will be done in my husband's life. I continue to hand my husband back to the Lord & trust Him to do what is best in Daron's life.

Will you pray with me that all of this will work out within God's perfect will?

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