<via http://www.gpawarenessfund.com>
Today will be a crazy busy day in a crazy busy week.
It’s already well underway with Ryan doing his first of two HBOT (Hyperbaric Oxygen Treatment) therapies. The instant he gets out Dr. Hinkle will be waiting on him to check his eyes. Right behind that is a remotely administered neurofeedback session with IBRF (International Brain Research Foundation). Finally, his baclofen reduction. Yikes!
The good news is those should all be done by early afternoon.
Somehow, and I’m not at all sure how, we’ll need to get all his other regular therapies in too. Oh, and on top of it, I need to find a way to get a urine sample over to Dr. Rodriguez (leukocytes are present again) for culture and another sample to UPS for overnight delivery. As the youngsters like to say, “FML”, which is text-speak for “F#*% My Life” for those who aren’t “wit’ it”. Note: As I was writing this Sue called me to say she already found someone to do this later today!
Specific to the baclofen reduction, the dosage is being taken from 80.1 mcg to 60 mcg. The next reduction, provided today’s goes well, will take him into the low- to mid-forties. At that level I have a decision. I can either step him down one last time (30 mcg or so) or completely stop the medication and see what happens. I’m leaving myself open to either. Again, it will all come down to my instincts.
I apologize for the short post today. As you know, the events of the day are a bit daunting.
Good luck with your busy day. I loved the picture, even tho we have never met this is the way I picture you!!! SHSP!!!!!
Ken, That is a very busy day, but then aren’t they all! Your instincts have gotten Ryan to be (as Keri said)incomparable to others.Always follow them Ken. Wishing an otherwise calm peaceful day for you all. We are always with you and behind you ,praying and cheering you on in all you do for Ryan Love Gail
“At that level I have a decision. I can either step him down one last time (30 mcg or so) or completely stop the medication and see what happens. I’m leaving myself open to either. Again, it will all come down to my instincts.”….. and boy oh boy, do I love YOUR INSTINCTS. One of major reasons why RYAN is where he’s at TODAY. His care, under your directive, is incomparable to most TBI patients. This is what is helping him to progress and to heal. SO GO FOR IT KEN!! Do whatever your heart and your instincts tell you to do and we’ll be here holding you up in prayer and cheering you on from the sidelines.
GO KEN GO!
With love and in prayer,
Keri, MY Frankie and Family
So glad to hear from you today, I always get worried (and miss your posts) when you take a day off. Ryan is so loved and cared about and I can’t say enough about how much admiration I have for the love you and Sue and Kari give to Ryan. There are no words to express how you and your family and especially Ryan have impacted so many lives. There is only positive results that can come from everything you are doing for Ryan. I hope you get some rest after your hectic day. Please know that you are never alone in any of this. We love you all!!!!
Coleen expressed exactly how I’m thinking and feeling this morning. She is right, you are never alone and we, too, are with you in spirit. Thank you for this update during your busy day. Spring is here, and we hope you can get outdoors to enjoy it today. Hope, faith, love and prayers.
Ken glad to see between you and me at least you’re “wit it”.