10 Things Happening: February 2014

I’m back with what has turned out to be the very popular “monthly happenings” of what’s on Ryan’s list. This month I have ten items that I think you will find of interest. I broke these into groupings in five categories.

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.

 

Website

• 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.

 

Equipment

• 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.

 

Procedures

• 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.

 

Home Projects

• 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. 

 

Big Deals

• 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.

 

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• Eye Surgery Expected
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• Infection Free in 2013!
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