The first twenty-four hours since the baclofen reduction is almost reached. The dosage was dropped from 96.1 mcg to 80.1 mcg (a 16.5% reductions). Ryan appears as though he is tolerating it well and I’m not seeing any negative effects. He rested well overnight. Like all the other times before, I’ll know better as I put him through his therapies. As I write this he is on the ActiveCycle working his legs and all seems fine. Of course, I’ll feel a hell of a lot more confident after the seventy-two hour window passes.
In anticipation of continued success, I tentatively scheduled the next reduction on March 15th. I’m thinking the infusion rate should be knocked down to at least 65 mcg, but it might be worth going to 60 mcg. I’ll just follow my instincts that, so far, haven’t let me down. It’s just crazy to me that he was at 400 mcg last year at this time. It was in June 2011 that we went balls-out with the reduction schedule.
Here’s the thing… these reductions never become less stressful. Each time it’s done I become über alert, looking for the smallest sign of discomfort or improvement. I’m telling you if it backfires I’d never forgive myself. Ryan has been through too much already and I would feel awful if a decision of mine led to more. So, if you don’t mind, I’ll save my bragging about it to when (and if) the baclofen is no more. Until then I’m afraid I’ll just jinx it.
Also, it’s really hard to believe that Ryan might be off baclofen entirely before the long days of summer roll around. I’ll make this my birthday present to myself if this happens (my birthday is in June… save the date).
Hey, it’s better than a power tool or a tie, right?
We are standing with you during this time and I can feel that this is a crucial time and that your heart is expecting more great things and mercy from our Father. I am believing God with you as you strive through this labor of love for Ryan. I am still astounded about this entire situation; it is a time for God to show up and show out as during the times when God was the last resort, and saints had no One else they could depend on but God and His mercy, power and grace. May the Lord who loves Ryan and you and your family (and others who are struggling) continue to bless and keep you during this time.
Glad to read continued progress with Baclofen Reduction. I also believe it is a sign Ryan is healing. We continue our prayers for Ryan to keep healing and for your continued strength. God Bless you.
Hang on Ken. Hang on. History has shown us many times over, that ALL of your decisions have been made with careful consideration and serious contemplation. There is nothing willy-nilly about ANYTHING that you do-especially when it comes to caring for Ryan. Having said that, it is clear that some of your decisions bring with them risks that scare the bejesus out of you. Please try to remember that in these instances, you’ve ALREADY determined, with careful consideration and Doctor’s approvals, that the benefit far outweigh the risk. If it didn’t, you wouldn’t be doing it. Please find some peace in that. With every ounce of your being you continue to give Ryan the very best of care. Better than he would have received ANYWHERE. I am confident of this.
I will continue to pray that Ryan tolerates the baclofen reduction. I will continue to hold YOU in my heart… and I will ask GOD to help your heart be at peace.
With love and in prayer always, forever and until.
Keri, My Frankie and Family
Obviously Ryan is healing, that is for sure. As his Dad I can understand your over alertness but be at peace and know that our Lord is working through Ryan. Ryan is just taking his time healing. I am sure he thinks he is on vacation at some resort where he is getting such wonderful care. I bet he thinks he is at a Spa and Resort Club.
Ken, Holding our breath with you that all goes well with reduction, like Paula said, you’ve done great so far! Wishing you and Ryan a calm day and that you get in his exercises .Keep up the GOOD work. We’re all behind you.Say hello to Sue and Ryan
Love Gail
Must have hit submit twice,sorry
Ken, Holding our breath with you that all goes well with reduction, like Paula said, you’ve done great so far! Wishing you and Ryan a calm day and that you get in his exercises .Keep up the GOOD work. We’re all behind you.Say hello to Sue and Ryan
Love Gail
What blows my mind is that you have had to shoulder all this critical decision making pretty much single handedly!! Just bear in mind that every decision you’ve ever made regarding Ryan has been with only the best of intentions. I would never want to see you beat yourself up for *anything* Ken. You’ve done far too much good, for so very long, and it’s because of you that Ryan has exceeded (and continues to exceed) every expectation the doctors had. Try letting that soak in, it’s pretty incredible!! I know the greatest desire of your heart is for Ryan to conintue to recover and do well. He has and he will, but I pray you will never fault or condemn yourself if you don’t make a perfect decision once in a while. The scales will always tilt heavily in favor of all that you’ve done that’s good!! He was at 400 last June, wow, it’s so hard to believe — you have done a phenomenal job with this reduction, and according to what I’ve read it always must be done just so. And you have done so well with managing it, Ken.
I hope you and Ryan enjoy a day of warmth and coziness as the early rains of Spring green everything up – probably just in time for a random snowstorm. I hope you can take some more pictures of Ryan soon (and Duke of course) — thinking of you all and praying for a smooth and positive day!!
Love, hugs, prayers
Paula
Keep trusting in your God-given instincts in caring for Ryan and we’ll keep lifting him up in prayer. With you, Sue and God on his side, we are confident in his contined recovery. We hope you can breathe another small sigh of relief in a couple days as Ryan adjusts well to this latest Baclofen reduction. Hugs and prayers to all 4 Divineys <3