I can’t begin to tell you how nice it is that yesterday is behind us. It was a whirlwind of activity from start to finish. I’m still not sure how time allowed it but I was even able to get Ryan outside for thirty minutes, until we were driven in by a small burst of rain.
When we finally put Ryan to bed and flipped on the NCAA March Madness (that I paused on the DVR), I was mentally numb. Sue started to ask me a question and all I could say is, “Please, I’m done thinking for the day”, trying my best to look as pitiful as I felt. I was grateful she was okay with that. Quite grateful, yes-indeedy.
Let me jump right in with the baclofen. Ryan is nearly twenty-four hours post-reduction with no clear negative effects. He had another great night… in a small-run of great nights. As delighted as I am that he is tolerating the baclofen decrease, I’m equally disheartened that no encouraging signs of alertness or awareness are present. Like in the past, I’ll feel more comfortable come Sunday when seventy-two hours passed. Preemptively, I already sent off a request to the neurologist for the next reduction (45 mcg) and scheduled the date (March 26th).
We did receive some good news on Ryan’s forearm that was fractured over a year ago. The ulna bone, although not completely joined, is mostly healed… and in a good way. The weight-bearing part of the bone is in great shape, and therefore it is strong and stable. Well, as strong as his compromised bone density allows. It certainly would have been nice to be given this analysis up-front!
Dear Ken,
What are Ryan’s doctors saying about the lack of a faster pace in his reactions after the reduction? Is this to be expected? With all the work you have done with and for him, I wonder if it comes down to his body needing more time to heal. I would imagine that is not something you want to consider because of your intense desire to have Ryan wake up. I know I would have a hard time accepting that.
I remember when I first got sick, I thought I would be better in a month, then by the fourth of July, then Christmas. I finally gave up expecting my body to recover on my schedule. To say that this was a painful realization is an understatement, on a grand scale. Ten years later after many, many disappointments and several highs (comparatively)I have accepted I don’t determine this. I never had. I am a tad bit of a hard-head and control freak so it took me a long, long time to accept this.
I am not saying stop doing all the amazing work you do with Ryan everyday. For that to happen, would be tragic. If you have not, I hope one day you will open your heart and let God in. Ryan may not heal to the point that you want so dearly, but knowing that someone higher than ourselves gives us a circle of love and support, is an amazing gift. Placing it in God’s hands did not take away the need for me to do everything I could to heal, but it did buffer my anger and anxiety about my health, and provided me a whole network of people that have supported me in every way imaginable. I did not know people like this, that gave so much of themselves, ever existed before. We will continue to lift Ryan, you, Sue and Kari up in prayer. You are very, very loved, Ken! XXOO
Ken, So glad yesterday is over for you and Ryan,too. Hoping reduction goes well and there is a little good sign..How you do everything is amazing….What a relief to know arm has healed properly. Maybe you can find the time(????) to get a rest today . Tell Ryan I said hi and always here..Love Gail