I guess it’s becoming a weekend tradition where I put out a summary of what’s going on. People tell me they like this and it certainly works for me.
- Baclofen. Ryan tolerated the last reduction earlier this week well. I’m breathing a hell of a lot easier now that he is beyond the seventy-two hour window. The next reduction is March 15 and it will be reduced to 60 mcg.
- Adult Protective Service. In early February some imbecile sent an anonymous letter through the U.S. mail. No surprise, the case is deemed “unfounded”. It’s frustrating that government resources we deployed on a wild goose chase. Still, I did appreciate the kudos from their office. I won’t go into it all again, but if you’re interested in reading up on it you can click on my February 9, 2012 post Faceless Bastard: Ignoramus or Trouble-Maker. By the way, I never received an apology from the author so I can confidently call them a trouble-maker. Ignoramus not withstanding.
- Kari. She’s home until Sunday afternoon! Sue has her for the day as they are getting their hair cut, colored, and styled. Here’s my amazement, why does it take so long to get this done? Complain all you want about men spending the day fishing or golfing because this is the womanly version of it. Am I right? Anyhow, if I’m up to it, her and I just might hit the town tonight.
- Greenfield IVC Filter. I wrote about this earlier in the week (When Does it Ever End?), and Sue is working on this diligently. It’s frustrating that, although the medical community brought it to our attention, they don’t share the same urgency in resolving it.
- MotoMed. Ryan needs this piece of therapy equipment. Everyone in the medical and therapeutic communities agree. A friend did all the leg work and the product will be demonstrated and sized in two Sundays from tomorrow right here in our home. Unfortunately, it will cost much more than I thought but the original $9,200 goal will not change. I simply don’t feel right about asking for more and I’ll redirect money from future fundraisers towards it. If you want to read about it or give, the information is listed on the Events page. Please take a moment to look over all the other things going on.
- Hoyer Lift. On Thursday morning the lift stopped working while Ryan was in it (high in the air). The problem was diagnosed and the parts (power supply and battery) arrived yesterday.
The Colangelis says
Thanks for the update. Hope you Ryan and you have a good week and we continue ofur prayers for you.
Paula says
Hi Ken,
Praying for a good week for you and Ryan. Thank you for always keeping us in the loop about what’s going on. I really appreciate it!!
Keep doing what you’re doing, Ryan looks great!!!
Love, hugs, and always believing in Ryan and in you
Paula
Jo says
It’s true! They scare you to death, and then it’s hurry up and wait! Don’t let me get started!! If I get on this soapbox, we’ll be here all day! How very frustrating for you! I don’t know which health insurance Ryan has, or if I did, I’ve forgotten. With some, one needs a referral, with others one doesn’t. So, what’s the hold up? Can Ryan’s physician help? Please? Oh, the worries you have, Ken! And when you worry, we worry! We are praying that this issue can be resolved pronto!
Baclofen reduction again on the 15th, the Ides of March… …hmmm, always think of Julius Caesar — not that I am superstitous, but I once had a literature prof. who black-listed this date. He was a bit kooky, however. We will all pray that this reduction goes as well as all the others with no side effects whatever!
Hair salons and spas — you men have fun with this one: Our very up-town niece is opening a salon in Richmond that has a wine bar! This is a new one on me! Never heard of this except CA or NY. Richmond is becoming progressive rather than aggressive, hopefully. Lovely city –high crime area, but a lovely place to visit. I need to look up where their crime-rate standing is these days. I hope it has improved, unlike some other cities that are dear to my heart.
Yes, the fundraising must go on for the Moto-Med, and we are happy to learn you are going ahead with the purchase. A video will be in order when you get it. But, now I am wondering if the filter issue will be the first to address. How active should one be with this thing the way it is? Sounds dangerous to me, but is it? Presuming the Hoyer Lift is operational again and that is a good thing. This likely something we will be looking into with dear friends. She was recently diagnosed with ALS (Lou Gehrigs Disease ). Bad news, fast moving!
Hope you are going out tonight, Kenneth. Even Superdad needs a break. Love and prayers. Have a safe trip back, Kari.
Rita says
We sure hope you can get out this evening and enjoy some much-deserved fun time with your beautiful girl. And don’t forget to compliment her and Sue on their new ‘dos 🙂
Vicky says
Interested in hearing all on greenfield filter as Jonathan has two of them and the new neurologist has told us that the setback he had in november of 2009 was probably a stroke due to the latest CT scan.
also if you ever have time I would love to hear how the urinary condoms (sorry I don’t know the correct name ) are working and what the name is again.
praying daily
ryansrally.org says
The condoms are by BioDerm and called Liberty 3.0 (part # 23046). Here is a link to the information: http://www.bioderm.us/
Vicky says
Thank you!
Anna says
Thanks for the update, always appreciated. Hope the girls enjoy their day of hair styling. Not sure why it takes so long for cut n color, I guess they have to justify the cost. It doesn’t make sense though. In Baltimore it cost me $85 + tip for a cut n color at a not so upscale hair stylist. At the beach it cost me $55 + tip for the same thing, go figure. Neither places are high end, just your local hairstylist shop. Both take the same time. Good news on the hoyer lift, they are a life (and back) saver! Hope you boys get to catch the WVU basketball game today in the background, I am planning to have it on while I catch up on things here at home. Glad no infections are brewing and hope Ryans leg is healing ok. Always praying and thinking of you!
Gail Doyle says
Ken, Glad parts arrived sooner.Why would Drs. want to wait on getting filter corrected,makes no sense ,but,then what does ,right??????The baclofen reduction is unbelievable. Down to 60 in two weeks ,amazing!! Knew you wouldn’t get apology regarding Soc Ser. Any one who would do such a thing if they knew how lovingly and wonderfully Ryan is taken care of is ,as you said, is very ignorant..
So glad Kari is home for weekend ,Enjoy~ Hoping you get out for a little RnR. Please tell Ryan hello and give him a hug from me and a calm weekend to all Love gail
Lindsay says
So glad to hear things above.
Ryan,just go on!Keep on going:D