Since seeing him the first time, we tried some medicine with Chloe that made all the difference in the world in how she felt for about a week or two. Then she began to have horrible side effects emotionally from the drug. So for the past two and half months, we have battled a tremendous emotional battle. It has not been fun for anyone involved! But for a week or two early on, it was so fun to see Chloe feel good. I think it was the first time we ever have seen her feel good! But the feel good was not worth the emotional battle we have struggled to regain control over!
Last time, he did a ton of testing. He had the results of all those tests and despite what he wanted, he was unable to draw any other diagnosis. He had so hoped he could uncover something else that would make more sense. But...he didn't! So that leaves us back in the place we started...several different problems and can't pinpoint anything that would tie them all together.
So this visit, we began a completely different conversation and that was how to handle problems in the long term. There was no let's try this drug for three months and see if we can make her feel better. It was simple and matter of fact, what can we do that is safe for a long term situation to help Chloe not hurt. That seems to be the goal..no pain!! The disease is what it is. If you compare Chloe to boys, she is stronger than boys her age. But if you compare her to other manifesting carriers, she unfortunately is way more advanced than most all females he knows. He still hasn't given us a long term outlook! But I think his first mission is to get Chloe out of pain. Which, if he is successful, will be a huge blessing! While, his input is invaluable and brings much hope of a Chloe without pain, it was difficult and sad that we have to approach things from a "long term" outlook. Chloe and I both felt down when we left!
This doctor does believe her shaking episodes might possibly be related to the high dose of a medicine she is taking. Unfortunately at this time, she can't live without that! So...we are going to work at some other avenues of treating her pain. I really liked some of his ideas! Some ideas for trying things that no one has ever mentioned before. And I think he has some incredible reasons for trying them! So...for that I'm excited. We do have to move slowly as to try not to totally disrupt her emotionally again. We definitely do not want repeats of the past few months! And he is very cautious of treating the emotional as well as the physical which is a blessing as well. Over the next few months, we will do a lot of communicating via email about how she is handling new medicine and what results we are seeing. So that means I am in study mode. Watching all details and making notes of them!!!
Next time we go, (in October), there will be a slew of doctors and some more testing. Think we will see a pulmonary doctor next time with a good number of pulmonary testing. I think the good news is they have not totally bombarded us with everything at once. But...for a trip I thought I was going to make one time...well...it's becoming routine!!
This trip was easier because everything wasn't new! We were much more comfortable. We knew where to go! We were more at home at the Ronald McDonald House. We even took some time to make some thank you cards for some volunteers there! And we had Krisann. She was probably the biggest blessing! She attracts attention where ever she goes!! And there was no sitting in the room being bored with her around. She would have none of that. The idea to make thank you notes was a God thing. He just told me to do it and we did it! And what a blessing it was for us and for the large group of volunteers that day! So...we will go more prepared next time for such adventures. And Chloe has some ideas for putting together some "not lame" craft kits for them. So we talked to them about that before leaving. So between now and October, Chloe has some work to do to!
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