Like every month, there is just so much happening! It’s mind-boggling, really. So, as much as I appreciate how much you enjoy these summations, it also helps me focus and demonstrate that Ryan is always moving forward.
- New Q&A Page. I set up a “Question and Answer” page (see menu above) for two reasons. First, caregivers seem to seek me out with questions that are often similar. I respond to each one, but I’m thinking this might be more efficient. Second, I gets a ton of questions from caring people who are interested or are wondering if I am aware of research/treatment that they came upon and thought of Ryan. Sometimes these flood in, especially when a news item hits the news networks and other popular media, and I struggle to thank everyone. I’m not sure why it is, but it seems every year at least one of these outlets will do a “breaking” report on a sleeping drug’s (Ambien) positive effects on some who are in Ryan’s condition. I almost feel guilty telling them that we have tried it — on and off — for years now. The one I love the most was a recent CNN report touting the benefits to the brain with high doses of Omega-3 (Fish Oil). The reason I do is because Ryan was the second person to trial this; and the first in his specific condition. The first person was a West Virginia miner who was deprived of oxygen when a shaft collapsed. As for Ryan, he started on it the day following the attack and remains on it to this day.
NOTE: I am having issues getting the Q&A page to work properly. I’ll let you know when I figure it out.
- Ryan is All Over Social Media. Did you know that Ryan is available online through more than this website? While it is true that this is the hub of activity, it branches out to all the popular platforms: Facebook, Instagram, Twitter, Tumblr, Linked In, YouTube, and Google+. The one I particularly like is his Pinterest because it visually shows much of what is involved in his care. You can easily connect to any — or all — of his social media from this website’s Home page.
- Spa Lift. Since early last autumn when the targeted fundraiser was going on, I’ve tried to get this hoyer lift that will make it possible for Ryan to get in and out of the Jacuzzi. This should be approved today! The word is that (once approved) it will be shipped to the delivery company’s warehouse within days and be at our home not long after. I again want to thank all those who gave so that this is possible. Your help will (mostly) cover what insurance will not. Not only will this be wonderful physical therapy for Ryan, but will give him back an activity that he loved so much.
- Wheelchair. As with the spa lift, this is likely to be approved — in whole or part — today. The only item that appears to be questionable is the seat cushion. I want it to be like his current one, which has air bladders that change pressures so that his bottom is being repositioned several times an hour. The fact of the matter is that a new wheelchair is long past due. When he was fitted for his current one he was much worse. He was down forty pounds and stiff as a board. No that’s not quite right… he was stiff as an I-beam. Beyond that, this new chair will easily get him into a standing position with the touch of a button. I like this because it will save me the back-breaking and slightly risk y effort of transferring him to/from the standing frame, but more so because Ryan will be standing more often during the day.
- Tarsorrhaphy. Well, after trying for months, a conference call was held that included the eye surgeon, corneal specialist, and me. Ryan is penciled in for mid-April to have his tarsorrhphy (eyelids sutured mostly shut) relaxed in one eye. It was me who is holding the procedure off for a while now because I don’t want Ryan in a hospital environment during the cold and flu season.
- Sleep Study/Bone Density (DEXA Scan)/Urologist. For the same reason as the above surgery, I am pushing everything back until spring.
- Interior Room. Again, my deep appreciation to Blue Moon Construction for making what I’m about to tell you possible by not charging us for the labor! Sue and I decided to put up two interior walls to close off an area in our lower-level into a room. This will be multi-functional space, used during portions of the day for Ryan and at night for us. This room will have an extra-wide (42″) door with a zero threshold so that Ryan’s wheelchair will have easy access. I already ordered two night-vision cameras and a monitor (with audio/video and intercom) so that we will remain in visual and audible contact with Ryan. Granted, it’s a small step to regain some of our privacy, but at least it’s a step. Just so there’s no questions, Sue and I are paying for this entirely from our modest tax return (i.e., no money used from Ryan’s Trust Fund) even though he will be using it often. I might as well be up-front here… my real reason for doing it is to use it as a “Sensory Room” for Ryan even though I’m making it out to be something Sue and I might enjoy.
- Ryan’s Treatment Schedule. So, do you remember when I asked for guidance on using Ryan’s television as a computer display and cycling through his daily treatments? First, thanks to everyone who shared their knowledge. Without you it would still be a dream project. I worked on it this week and last night I tested it. It works! So, now (after a bit more tweaking) every 15 minutes a new slide will light up the screen with instructions and information for Ryan’s care.
- Successful Fundraiser. Ride to Give held a two week fundraiser for Ryan’s benefit. They raised roughly $18,500 (net) that was deposited into Ryan’s Trust Fund. It will go a long way in helping us meet this year’s expenses.
- Infection Free. Ryan continues to be in pristine physical health. He hasn’t had a once chronic, recurring urinary tract infection (UTI) in 1-1/4 years. His last respiratory infection was 3 years and 2 months ago. Heck, he hasn’t even been treated for an eye infection since last summer. Thank you for all you provide so that I can keep Ryan healthy!
As a final thought, I worry that people who order items for Ryan from his Wish List might not be aware that they can see when their order has been delivered. I am extraordinarily diligent about tracking this for you and set-up a webpage, Wish List Order Status, for this sole purpose. It has the tracking information, date ordered, date received, and item(s). The only column you can’t see (that I do) is the name of the individual who gave so generously.
Great to read no urinary tract infection in 1-1/4 years! Thank God. Those episodes were scary.
Ann H Tearle via Facebook says
God bless Team Diviney. Prayers and love always, Annie
That’s amazing that Ryan started on the Fish Oil supplement the day after the attack!
I never picked that info up. Good for the state of West Virginia to be on the forefront. Everyone always writes the state and their people off as a bunch of bumbling hillbillies….they started Ryan on a groundbreaking trial medication and knew Jon May and Austin Vantrease assaulted him all in the same week. Go …EERS!
Ann H Tearle says
Love the care you give Ryan.. BTW, is KatBob still with Ryan? Anyway, SHSP NGA ever, sending lots of love to Team Diviney
Amy Walters Gess via Facebook says
So happy to hear that all is going so well right now! Cant wait to hear how the new items are working out! We continue to pray for you and your family.
Rita Caporicci Hoop via Facebook says
Awesome update. Go, Divineys!
Carla Liberty says
Who was it that dubbed Ken “Mr. Smarty Pants?” Was it our girl Jo Hobbs? Whoever it was, was right on! Without your due diligence, Ryan might not be as physically healthy as he is today. WTG Ken!!
PS: It’s great to see the summation / update page every month. Thanks for keeping us in the loop.
As always, prayers up for all of you!
Yep, I think I said he is after he said we are. He really is The Smarty Pants King
(Applause goes here), and we say, “Hats off to Ken!”
Christina Brucker Shupe via Facebook says
Keep up the great work! It sounds like Ryan is doing good, especially with no infections! Thinking and praying for your family and Ryan.
HI Ken, thank you so much for updating us on everything that’s going on.
So many positive things happening, this really made my day!! You’re making a sensory room for Ryan — fantastic!!! I’m very happy you’re also able to get him the lift for the hot tub as well as a new wheelchair. I’m sure he’ll be much more comfortable.
It’s always encouraging to hear about all the things you continue to do to help Ryan as he heals. Very uplifting!! And I love that you are setting up a Q & A section. I imagine it will be very popular. You have such an abundance of knowledge and information to share — I know you will be help a great many people.
Sending you love, hugs, prayers and great hope always
Wendy Ainsworth via Facebook says
You guys are so swesome! Good job!!
Your dedication and thoroughness never ceases to amaze me. Ryan is so very lucky to be apart of your family.
Beth Broder via Facebook says
I am so HAPPY to hear that things are going well for you all and Ryan!!! I continue to think and pray for each of you daily!!! You all are of great inspiration to me!!! Ryan is so blessed to have such a wonderful family that loves him so!!! God blessed all of you & has made you a source if strength to people like me who struggle with physical disabilities. Hearing and seeing all the things each of you do for Ryan restores my faith in mankind!!! Thank you!!!
Jo Hobbs via Facebook says
Busy, busy, busy! But we know you, and you will Git R Done! You’re like that. <3