My intention was to give the weekly update yesterday, but I ran into all sorts of troubles with the website. Worse yet, these were caused by me messing with things I don’t have the proper technical expertise. This put me behind for the day and didn’t give me any time to write yesterday. Hopefully, this is resolved for good. Well, at least until the next glitch comes up… and they always do, even when I’m not the cause. It’s the nature of website design and administration, I suppose.
Before you get into the list below, I wanted you to know that I set up any clickable links to open in a new browser window. This way you can (hopefully) take a look at what I’m referring to and not lose your place on this page.
Here are the main points for the week:
- Baclofen. The scheduled reduction for tomorrow (Monday, March 26, 2012) might not happen. This has nothing to do with Ryan and everything to do with the neurologist not getting the script submitted. As part of my standard follow-up, on Thursday I asked for confirmation from the agency that does the adjustments. They told me the order was never received. I eventually heard back from the doctor (via email) late Friday and I’m still not sure if the script is in. My subsequent emails have yet to get a response. The plan was to decrease the baclofen from 59.98 mcg to 45 mcg. I’ll spend today trying to make this happen.
- Head Control. If you didn’t get the chance, you might want to take a look at some amazing head control Ryan demonstrated in a video we shot. You can see it in the post Video: Ryan Maintains Head Control (March 18, 2012).
- Website. Can you believe it, on the same day this website exceeded one million views it also crashed. I hope you took the time to read the post from yesterday, We Got This: One Million Views! It has some interesting website statistics but, more importantly, I do my best to thank everyone. Anyhow, it took me twenty-four hours to figure out the underlying problem. Like everything else, I just can’t sit down and devote uninterrupted time to resolving it. I work it in as best I can, but I usually give the website high priority. Those who follow us on Ryan’s Facebook Fan Page or Ryan’s Twitter were made aware of the site going down immediately, but I worried about the readers who had neither of these.
- Outside Time. It’s wonderful! Ryan is spending more-and-more time on the patio. Last Sunday he spent the entire afternoon out there with Sue while I napped. On Friday morning I did some of his morning therapy (about two-and-a-half hours worth) in the warm sun. Other days I’ll just take him out for an hour or two to relax and listen to me ramble on.
- HBOT. Ryan is exactly half way through his thirty-day Hyperbaric Oxygen Treatment cycle. This cycle will end on April 9.
- UTI. There are five days remaining on antibiotics specific to this urinary tract infection strain. Once completed, he will return to a low-dose prophylactic course, taken once daily.
- Nights. Ryan was fidgety earlier in the week. He didn’t seem uncomfortable though. Just restless. The past two nights have been better, with last night being his best of the week.
- FES Therapy Equipment. On Friday I closed a deal with Restorative Therapies to buy their product, called the RT300. Delivery is expected in three to four weeks. I’m very excited for Ryan to start using this. Last Sunday the company brought their equipment to our home to trial and size Ryan. The benefits to him are enormous. The functional electrical stimulation (hence, FES) actually makes his muscles do the work. So, we bought modules for both the arms and legs. This therapy actually builds muscles, increases bone density, gives a cardio-vascular workout, and provides electrical stimulation that has the possibility to train the brain to work with muscles (to relearn movements). The targeted fundraising effort (that continues) raised $2,645 to help offset this cost. Thank you! The Briar Woods High School lacrosse team fundraiser held last week will also be applied. If you want to give or just see the fundraising progress then click here. We could sure use the help.
That’s probably enough of an update. I’ll let you know tomorrow if the baclofen reduction happens.
I love hearing that Ry has been out in the sun. It has such restorative properties. I would imagine he seems more relaxed and comfortable after spending time outside. I saw the post from Kari about Panama, she looks so beautiful and carefree. Give our boy many hugs and kisses from me and the kids~XX00
As far as I am concerned, please don’t give a second thought to those of us without Facebook and Twitter. If the website happens to be down, we’ll just suck it up. We are super grateful that you are so diligent with all you’ve got on your plate to keep the website going–far above and beyond the call of duty! So glad to share in all your news!
So glad you r able to get outside. The sunshine is so good for everyone. Nothing beats a little time on the back patio. Thanks again to your friends and everyone who contributed to the making of the backyard haven to be possible! Thanks for the update.
Thanks so much for all the info, it is very interesting to read. You have a knack for breaking things down, even complex things, so that they area easily understood. I am so excited about the new equipment you are buying for Ryan!! I am praying Team Diviney will continue to help with the costs of this, as I know it is very exepensive.
It’s a relief to hear that the UTI seems to be gone. I hope you get the go ahead today for the next baclofen reduction. I am still marveling at the way you know what needs to be done for Ryan — you always figure it out.
Looks like there’s a little bit of a cooling trend coming, but I hope you and Ryan can still get outside. It won’t be long before you’ll need a nice, big umbrella for the hot summer days. By the way, I loved the collage of pictures you put together for the One Million Views post. The one of Duke just staring straight into the camera was really cute 😀
Hope you, Ryan and Sue enjoy your Sunday together!!
Love, hugs, prayers and lots of hope!
Thank you for sharing the Head Control video – I have missed catching up with you all lately. So exciting to see him making such progress : ) It made me so happy that I must admit, I got misty. Can’t imagine how is makes you and Sue feel!
Gail Doyle says
Ken,So glad all is up and running ..was thinking about baclofen reduction and hope it goes through. Again ,thanks for updates and pray that UTI infection is cleared and gone for good.. Patio/deck sounds like it’s getting a lot of use!!!Great for you all to be out in the beautiful weather we’ve been having.Can’t wait for Ryan to get FES equipment and start using.Should be a great help to him. You take care of yourself,Ryan NEEDS you and Sue. Always here. NGA
Thank you, Ken. I always look forward to the Weekly Update. Just as I was about to comment on the “Million” post, it went down. One Million Views — a day to celebrate! The positive effects of views, good vibes, and prayers from Ryan’s supporters can’t be over-rated. Let the healing continue. SHSP~NGA
All sounds good! Sounds like the patio/deck has been a wonderful addition for Ryan! Hope everyone has a “quiet” day without glitches or complications. Always here to offer whatever long distance, smidgen of support I can.
The Colangelis says
Thannk for the update and look forward to hearing developments with the FES Trerapy equipment. Have a great day and hope next week’s weather allows for more patio time. Also, thank God the UTI is subsiding. God Bless you.
I did a urine dip yesterday and there were no leukocytes nor nitrite. A very good sign.