Thanks to everyone cheering Doug and Kirsten on today. It would be more than wonderful and more than worth it to take a trip to Hawaii for the "play-offs." It was fun to read some of the comments of our friends who had HSCT in November with us. You know friends and caregivers, maybe we should think of play-offs and reunion. It is great to share this journey. We heard from our friend Karin from Paris, France today. She is soon going to be entering a rehabilitation center. We are praying for Karin and hoping that her therapy is successful for her. And we heard from some of the other caregivers, Leanne and Rita, willing to be the water girls and calling the race. We heard from Christy and Jackie our Michigan friends who regularly share their progress and their journey. Isn't it wonderful to hear of the stories of hope and perseverance? Just a year ago, before HSCT, most of us were holding our breath in fear of the next loss or exasperation. Now we have hope.
Today when I came home Doug told me that OT assistant said that last week would be her last week. I said "Really, no one has talked to me about that." So I sent a text to his nurse and the OT. I learned that indeed that is the plan. Apparently Doug has met his goals. Of course I see all the things he still needs help with. This felt very similar to when Doug was in rehab. The therapists set goals and monitor their goals but we never know what they are. This is so different then my world of Special Education. We are required by law to set goals with parents/adult students before we begining therapy and we have to report progress. I don't understand why this is not required in the medical field. Maybe some day I will figure this out.
But here is the good news. Doug keeps meeting his goals. He keeps making progress. We are so grateful for that. And the difference this time, is that I am not afraid anymore of how I will care for him at home. I know that we can do this now. We have very little help. And I know that Doug's transfers are going well enough. I know that I can now get him to out-patient therapy if I need to. We will wait for now to hear word of how long he will have PT and the nurse.
One thing I do know, is that hope is important. The OT mentioned that Doug may always need certain supports because of his MS. I told her that since Doug had HSCT we don't know the limits of what he will do over the next months. First, we have to get through his recovery from poly-neuropathy. Then, we will have a better sense of the skills he may recover after HSCT. But one thing I know for sure...we won't let MS write his future. We are MS warriors. And MS won't beat us, not yet.
And so we pray:
God with Us, for Us, and guiding Us, we thank you for putting us on a journey of resurrection and hope. We thank you for all those around us that are filled with belief and hope. We are thankful for instilling in us with a sense of belief and hope. We pray that you will continue to surround us with friends who will dream with us and and will support us and travel with us on this journey. In your name we ask it. Amen
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