8 Things Happening: January 2014

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.

1. 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.
2. 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.
3. 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!
4. 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.
5. 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!
6. 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.
7. 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.
8. 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.

Sue snaps of picture of Kat trying to get in the HBOT with Ryan.

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.

Related articles

• 8 Things Happening: December 2013
• Eye Surgery Expected
• Infection Free in 2013!