BACLOFEN
The ten percent reduction in baclofen, now some fourteen hours later, is not causing any noticeable problems. Ryan is tolerating it well. He had a peaceful night. I’ll be interested to see how he copes with the decrease once I get him up (in about twenty minutes) and exercising. I’ll also be watching for any positive signs of increased alertness.
It’s so exciting (for me, anyhow) that Ryan needs less and less baclofen. Remember, he began the year at a rate of 425 micrograms (mcg) of baclofen. Now he’s at 315 mcg. In the world of micrograms, this is really quite a bit since one microgram is equal to one-millionth of a gram. Baclofen is highly potent medicine, for sure.
UTI
Once a week (at a minimum), usually on Sunday evening, we test Ryan’s urine. The results can tell us a great deal about Ryan’s health. For example, we can find if he is adequately hydrated — which he always is. We can see if there is even trace amounts of blood or protein. We can check his glucose. We also can learn if he developed a urinary tract infection (UTI), which is all to common with people who use catheters.
This week’s results showed the presence of UTI , albeit extremely early in the infection cycle. So early that I bet he didn’t even feel any discomfort. I’m grateful that we are able to stop these infections from becoming acute and knock them out before they really get serious.
Ryan is now on a ten-day course of antibiotic… again.
Related articles
- Baclofen Reduction Scheduled (ryansrally.org)
- Baclofen: So Far, So Good (ryansrally.org)
Baclofen reduction–update please! Today is 08/28–still no issues? Still here and with prayers for continued success (in all regards). Annie
No issues!
FANTASTIC:) Thank you for the update. Annie Still here…with prayers always..
Ken,
Hope all works out well with the Baclofen reduction, that Ryan tolerates it well, and moves that much closer to alertness. Anxious for him to return to us. Know it will happen, just patiently waiting for that time. You and Sue are such wonderful caregivers. Found that infection in the early stage and ready to address it. Ryan could not receive better care than what he has through his ever loving parents. You are the best!
Love, Peggie
Thank God you are on top of things and applying proactive treatment ahead of time before things worsen. You are really good at what you do and Ryan is blessed to have such a devoted father watching over him. Great job Dad!
Ken, Ms Blase wrote it–“trust me, it’s exciting for all of us”. I couldn’t have said it better. Still here. Thoughts, prayers and love, Annie
Holy earthquake, Batman! Did you feel it? . We sure did–read my FB board! I’m still quaking! Hope all Ashburn is O.K.
Ken,
My inspirational calendar had the following quote today and I wanted to share with you:
“We all mold one another’s dreams. We all hold each other’s fragile hopes in our hands. We all touch others’ hearts.”
You and Sue are such an inspiration to me, and I am sure I speak for many others here as well. Ryan and Kari are so blessed to have you two as their parents. Thanking God you caught the UTI early, and praying, like the others that there will be no side effects on the Baclofen reduction.
Still here. Love, carla
“It’s so exciting (for me, anyhow) that Ryan needs less and less baclofen. ”
Trust me, that’s exciting for all of us.
So far, so good except for the UTI, which the Rx will clear up. So glad you keep such a close check. Always here.
Love
Ken, Glad Ryan seems to be tolerating lower Baclofen and praying his alertness increases .. Hopefully the UTI will clear up without discomfort to Ryan,catching it so early. Thinking and praying for Ryan and all your family every day.. Gail