Every month is filled with a “to do” list that is insanely long. What I like to do, for you, is go through it and pick out the items that are notable and that you would find the most interesting. I like that you appreciate getting these updates and that these posts are incredibly popular.
For me, it assures me progress is being made. And yes, it’s equally frustrating when items are not crossed off the previous lists, despite every effort to make this happen. Eh, I guess I have a sense of urgency that doesn’t align with the medical community. Thank goodness I have you on my side to keep the ball rolling! When it comes to my philosophy, it’s simply “never stop looking to improve the situation” and you make this happen.
Before starting the list, I want you to know how wonderful your comments always are, but lately they have been nothing short of amazing. It means a lot to know people care.
Now, on to the list.
- HBOT. Ryan resumed his hyperbaric oxygen treatment (HBOT) this month. It takes up so much time (3 hours a day, in total), but I believe it is well worth it. We’ve been doing this, every other month, for over three years now. For those new to Ryan’s story, he was the first in his condition — to this degree — to receive this type of therapy. I pushed, and pushed, and pushed to make this available to him. No one in the medical community was willing to join me, so we bought the chamber outright and did it ourselves. The results are undeniable. Sure, the medical community would see my efforts (and the results) as antidotal, but I really don’t give a hoot. I’m convinced. During the active months it makes the balance of the waking-day a struggle to get in his other therapies, but I’m not stopping it. I do it, but it’s always without a second to spare. It’s never a good thing to be competing against the passage of time.
- Lift (Spa). The waiting continues to get the lift that can get Ryan into the hot tub. It could happen any day… but it could be another month. The thing is, it will happen. It will because you provided the resources to do so and I will never forsake that trust. You have my assurance that I am aggressively leaning on those involved to make this happen. Persistence is everything when it comes to providing for Ryan in the face of industry apathy. The money was given is secure in Ryan’s Special Needs Trust Fund for the time being.
- Wheelchair. When I ordered the spa lift I also ordered a new wheelchair. Ryan’s body has changed so much — in a good way — since he was fitted for the one he has now. The main feature of this new one is that it can get him into a standing position easily. To carry out this upright therapy now I must transfer him to a standing frame, crank him up, then transfer him back to his chair when done. It’s a huge hassle that will be replaced by simply pressing a button!
- Tarsorrhaphy. Some months ago I took Ryan to a corneal specialist then the eye surgeon to decide if we could give Ryan’s eyes more exposure. A couple of years ago he needed both eyelids sewn mostly shut to prevent him from losing his eyes. They were at risk of “melting away” from dryness. Visual input, I feel, is critical in his cognitive recovery so I asked if we might be able to loosen them a bit. Well, it seems I have everyone’s agreement to not only loosen them, but center the opening more in one with his natural pupil position. This requires him to visit the hospital operating room for a day. With the flu season being so severe I am putting this off until the spring.
- Infection Free. A few weeks ago, right around the beginning of the year, I wrote about how well Ryan’s is doing physically. It’s really unheard of that someone in his condition is this healthy. All are plagued with pneumonia, urinary tract infections, skin infections, and infections rarely ever heard of. Well, he went the entire year of 2013 without an infection! Not one!
- Blood Work. The results of Ryan’s full set of blood work were outstanding! The best ever, for that matter. It’s another indication, this one clinically objective, that Ryan is healthy and thriving.
- Sleep Study/Bone Density Tests. Like the decision to delay the tarsorrhaphy, the same is true for some other tests that we have routinely done. These are on hold until the cold and flu season pass.
- Wish List/Donations. The response to my earlier post, The Yoke I Bare: Need & Guilt, was beyond belief! Items that Ryan needed (or would be helpful) flew off the Wish List. I caught me off-guard! Not only that, but you made it a point to ease my guilt. Enough so, that I decided to see if I could extend it so that we get a few months ahead on his items… and you gladly made it all happen! You really are genuine folks. Thank you, everyone, for making purchases and sending Gift Cards on his behalf. I was so afraid that some would think I was being overly zealous, but no one did… and most told me I should ask for more! Wow. Just, wow. Your support touches my heart so profoundly.
Before wrapping-up, I want to bring you up-to-date on the new addition to our household that I wrote about in December… Kat Bob. This is a kitten (now 10 months old) that Kari rescued last fall and now lives with us. This little fur ball loves Ryan. I just can’t believe it! Especially from a cat. From the beginning she slept with (on) him every night. Now she hardly ever leaves him at all.
She lays in his lap all day (when Ryan’s not doing therapy). When he is doing therapy she seems to want to do it with him, like when she actually sits on the vibration machine as Ryan is humming away. Kat even tries to get into the HBOT with Ryan! I always make sure she is not in it before zipping it up.
It makes me smile when I see her looking in at Ryan through the chamber’s portal windows.
Re-reading my post….meant to type “infection free”,
Great report; especially the part about Ryan staying injury free in 2013. Your effort must have something to do with it. Keep up your efforts to keep him strong and in excellent physical condition. Good job. You guys are in my prayers.
All I have to say today is ……..Another female who can’t take her “paws” off Ryan.
Tana Kids via Facebook says
got it to finally work. thanks.
Tana Kids via Facebook says
ken, the amazon orders may not be working correctly, i ordered before by using the wish list link and had no problem, this time, it allows me to pick my item, but doesn’t let me get beyond that, it wants me to put in an address?
This is all due to your hard and loving and faithful work. My hat is off to you, Ken. God bless you!
So glad to hear that Ryan is doing well. Love that Kat bob and him have such a special bond. Animals can be so therapeutic. Also glad to hear that you received so much support from your last post. Take care…I look forward to your next update.
Beth Broder via Facebook says
SO HAPPY to hear that Ryan is doing so well. Lots of prayers,wonderful thoughts,warm wishes,hugs & love being sent your way!!! May God bless you this year with a FANTASTIC year & may Ryan continue to thrive & get better each & everyday!!!
Debie Johnston says
Great to get updates !!! Love them, I like to know whats going on, prayers to you and yours !! Hang in there sounds like things are improving every day. Louisiana loves ya’ll 😉
Naa Ameley Tagoe via Facebook says
Wow… Katrina Robert (Kat Bob) is doing her part… Always there for Ryan. Miss you all..
carrie greathouse says
Pets do wonders they make everyone happy.. Ryan one day will be able to love hold hug him I do believe. His progress is Awesome I loved watching him “eat the sauce Kari fed him” Miracles happen evey day Ryan will be one of them. <3 Ryan's rally. Thanks for all the updates.. Your family is truly WONDERFUL.
Christina Brucker Shupe via Facebook says
It seems like Ryan is doing good, especially going a whole year without infection! That is great! Keep up the good work! The kitten is so cute. That is great how she stays with Ryan! I like reading the updates on Ryan also.
Sue Bennett Markley via Facebook says
So interested in Ryan’s updates as I have a grandson with traumatic brain injuries also. Ryan is in my prayers every night also .
Rainey VA via Facebook says
This is all incredible but the kitten really blew me away! I know….not the most important detail but just love it!
Me too! I loved it! I am glad to hear you are not putting Ryan in jeopardy by getting his eyes done, sleep study, etc. I am loving that Kat Bob is communicating with Ryan in a way that none of us may know or understand. Photos of her all over him are amazing. LOVE it!
Gail Doyle says
Hope things start moving faster with Spa lift and wheelchair.
Great about Ryan’s bloodwork..he sure looks in top physical shape
Don’t blame you for putting other tests off till spring .Drs offices and hospitals
are the worst for picking up infections. Give Ryan a big hug from me, and you stay well Ken
Jo Hobbs via Facebook says
“Healthy and thriving,” best words ever!
Can you send me some details regarding the wheel chair? (Name of Company;model or a link?)
Obviously Ryan is being meticulously cared for by you and Sue. Having the cat around is just a great, unexpected gift.
Ryan's Rally LLC says
Yes, I will. Would you mind waiting until I get the itemized invoice?
PK Miller says
Glad things are going well and you have a “therapy cat!” I hope Ryan got a flu vaccine. That will help keep him flu-free or, as in my case, keeps it from being severe. And again, Ken, don’t ever feel guilty. You are doing what is best for your son, that’s what’s important. You’re being a good father. Ryan is blessed to have you and that you care so much. And you must be doing something right if Ryan is infection-free. God bless & keep you all in His care.
Ryan's Rally LLC says
Yes, Ryan — and our whole family — got the flu shot in early November.