I’m a nervous wreck… and have been since yesterday. Really, nothing short of an exposed nerve. Ever since the reduction in the baclofen infusion rate yesterday afternoon I keep expecting the worse. I’m so scared I made the wrong decision to lower the dosage. So scared.
The change technically affected Ryan around 5:00PM, once the existing medicine in the catheter was fully pushed through. We’re only 15 hours into this, but everything is looking good. Twenty-four hours must pass before I start feeling comfortable. I need this time to observe Ryan going through his daily routine. Forty-eight and I’m (almost) convinced it was the right call. Knowing myself, a good week or ten days must elapse before I am certain.
As for my statement about when life giving me lemons, I make lemon meringue pie… this generated a lot of comments. Heck, some were even a bit jabbing. What do I have to say to that? Huh! Bring it on, girlfriends!Just take a gander at this…
If I learned just one thing from the hours of Sue watching the Food Network, it is this: Plating is everything. The food might taste like cardboard, but a cook can get some serious style point for “plating”. Not that I ever really gave it any thought before, but who was it that made the word plate a verb anyhow?
I wonder if I might be able to use it as a swear word, both as noun and verb? I bet I could make an adjective out of it too. Ok, here goes. You know, something like “you mother plating jerk can just kiss my plately plate”.
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Jen says
My dear Ken,
Might I be one of those said “girlfriends” having been called out regarding the pie?? It was beautifully plated (I just had a snob moment) and delicious I am sure. Keep letting us know how he reponds in the next few days. Hugs~Jen
Katie says
I am glad that things are going well with the reduction! I will continue to pray that it will not effect Ryan in a negative way and that his muscles will only improve!
It was brought up in a meeting with one of his last docs to maybe trial it again. Ben has not had it done since Shepherds and that was a long time ago. He was very loose and it worked well (from what I remember) but he was super sedated! He is by far so much more alert now and it would be interesting to see how it would work! I would love to know your thoughts on it!
Blessings!
ryansrally.org says
Katie, it helps Ryan a great deal. Seeing how active Ben is able to be on his own, if he did get one he’d be on a relatively low dosage (I’d guess). You are right about it having the potential to over-sedate. This is why we are carefully lowering it every chance we get.
The Colangelis says
Gog helps you make the “right” decision.
The Colangelis says
GOD (not Gog). please excuse earlier mis-spell
Paula says
Now Ken, did you really bake that pie? Or are you just messing with us and writing plateitudes to hush us up? Dude, you’ve got gold plated hands!! Medicine, machinery, mad scientist, skills, and now — plating a pie so attractively that it puts all other platters to shame. I’m going off now to contemplate all of this. “Polymath” no longer covers your range of talents — you are a veritable Plato : )
Sending love and prayers to you, Ryan, Kari and Sue
ryansrally.org says
Damn, Paula, you’re good! No. It was store bought (came with one of our delicious meals). I couldn’t resist. Besides, I’ve been working for a long time to somehow talk about plating.
Paula says
Ken, somehow I think your pie would have had more pizzaz lol!! Don’t know about you, but I find that word “plating” to be utterly ridiculous. I guess I just don’t have the right amount of class to grasp it haha. I wonder if “glassing” could be a word — or — never mind. Good night, Ken!!
Dianne says
Ken, so glad to hear that the reduction of baclofen is doing well. We’ll keep our fingers crossed & keep saying our prayers, for sure!! Thank you for keeping us updated. Carla, what a wonderful dream! I’ve had short but positive dream about Ryan, too, but none quite that memorable.
Sam says
Just when we were afraid your sense of humor had hit a “Plate”au!
Carla Liberty says
Hey Ken,
Great to hear that the Baclofen reduction is doing well. Also nice to see your sense of humor back in full “plate” mode! You can bring smiles out at much needed-times. Thank you for that! Speaking of smiles, I had a dream about Ryan last night. In it, I had come to visit and Ryan was sitting up, smiling and when I asked him if he knew who I was he said, “It’s Miss Lib.” When I asked where you and Sue were, he said “They are in that room with my relatives. I made them get some rest.”
Just had to share. Sending love/hugs/dreams of the crabcakes I still owe you for your birthday.
Carla
Paula says
Carla, I had a vivid dream very similar to yours about six months ago. Wow. Miracles still happen in this age and we’re watching one.