The Point- for now.

The point to this trip?  At first glance, it may seem like we are no further ahead then we were a week ago but there are many positive things that have come from our time here.

At our last visit here about 9 months ago, the doctor was a little casual in his diagnosis of Mitochondrial disease and that has left me with some questions.  This visit had a much different feel to it.  Clearly, the kids have mitochondrial disease but exactly what the process is remains to be seen.  He is testing one theory of it today with the POLG genetic test.  He is very confident this test is going to come back positive but I have decided to not speculate too much.  The kids have the majority of symptoms, it is recessive and the carrier can have some symptoms as well, which I do.  If the kids do in fact have this disease, he will add some things to the current cocktail mix we are on but the bottom line is, there is no treatment he can offer that will fix this.  It is progressive and depending on how fast it moves, can swiftly end a life or it can just make the quality of it really poor and painful. 

This visit has put things in perspective.  When we got finished on Monday, Shelbie totally fell apart even before we could get out the door of the hospital.  We went down to the cafeteria to get a drink and calm down but she ended up storming out.  I left the boys with a drink and a donut and went to find Shelbie.  She was standing in the corner of a busy restroom crying.  It was the saddest thing in the world to see and all of a sudden, she was my little girl again.  A little, scared girl I wanted to scoop up in my arms and make the world go away. 

I walked her out to a quieter place and I let her come unravelled and that was hard to hear such angry words, most of them directed at me but I kept telling myself she was just tired and scared and didn't really mean any of it.  By the time we finished our talk, she was calmed down.  To her, she hears that she has yet another disease, one more problem and her frustration is, "How can one person have so many problems that no one can fix?"  She was hoping for a cure.  I explained to her that she doesn't have 20 different diseases, she only has 2.  The 2 diseases together cause problems that can feel like lots of different things but it's not.  She understood that and although it seems like a feeble explanation, it's true.  It's much easier to think in terms of 2 than in terms of 20.

The rest of the day was hard as each one of the kids slowly came to terms with the day and I had to help them navigate their feelings and sort through it all.  Each deals with this in a different way and that becomes tricky not to mention hard. 

I am glad we came.  Shelbie is starting a new medication for the nerve pain and tingling she is having in her legs and will hopefully keep her upright instead of falling over.  When we get home, she will have to have the tilt table test and Spencer will have to see an Orthopedist about his weak ankles that make him fall and he will need to see our GI in Boise, so another trip is in store for us.  Sam will have a visit with the Opthalmologist to see if there is treatment for his Ocular Migraines. 

More tests today, a one more big one tomorrow then we are out of here.  Hopefully today, I can find a way to lessen the stress and stop worrying about how to pay for all this and make up all the work I have missed.  There are lots of good things that have come out of this visit but to list them all now would make for a novel, not a post.
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Comments

  1. Man, that is a lot to take in for you guys!! Just know that there are lots of prayers happening for your family. We love and miss you guys!

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