This past week was busy, busy, busy. On top of it all, it seems our cars agreed to make our life miserable at the same time. It’s true, they are getting old and high on mileage, but weren’t causing significant issues until recently. The past few months are an exercise in swapping one for another at the repair shop. I’m not joking when I tell you it’s like a revolving door. Yesterday was the worst so far. I get a call from Sue as she is on her way to work. She’s telling me the engine coolant gauge is pegged at “hot”. I tell her to pull onto the breakdown lane of the Dulles Toll Road and kill the engine. Now! After enough time passes that I’m comfortable she won’t get scalded, I ask her to slowly unscrew the radiator cap. It’s bone dry. Fortunately I put a jug of antifreeze in the car for just such a crisis. She fills the radiator and drives directly to the local garage where — you guessed it —- the other car is already in for repair. This other car has a gas-filling problem. Basically, it takes fifteen minutes to fill the tank. As Sue drops off the one car they tell her how much is involved to correct this. Well, the cost of the repair is just too much for us. So, she leaves the one and takes the other that was already there. Sadly, she has no choice but to live with it. Later that day we learn that coolant is leaking from a radiator hose. Phew, I think, this is a quick and inexpensive fix. Oh, but there’s more! Some front-end damage from a hit-and-run (another example of people not taking responsibility) last year means this problem is not going away with a new hose. They cannot, safely and in good conscience, repair the $50 hose until we repair the underlying damage. Agh! I shared this with you because it’s something we all seem to go through every few years and I know you will appreciate the frustration. It’s the classic “cost to continue repairing or buying a reliable car” dilemma. My history is to run the car into the ground. Unfortunately, we might just be there… with both cars. That felt good to get that off my chest. I could go on and on, but I’ll just jump to the top updates for the week:
- Top FaceBook Fans. This was something fun I started about a month ago. It’s an algorithm that determines the most active fans on Ryan’s Facebook Fan page. The premise is simple. Points are awarded for participation. For example, a person receives one point for a “like” and five points for a post. Points are also awarded for sharing and commenting. I wish it would give points for simply visiting the page, but it doesn’t. If you’re interested in seeing the results or where you rank, just click here to visit the summary in Ryan’s FaceBook Fan page. Again, this is just for friendly competition.
- Baclofen. This past Thursday Ryan’s baclofen was reduced from 80.1 mcg to 59.98 mcg. He is tolerating the change well, with no apparent negative effects. The next reduction is planned for March 26th when it will step down to 45 mcg. It’s entirely possible that Ryan could be weaned entirely before summer.
- FES Therapy. We now have two companies under consideration for this therapy equipment (MotoMed and Restorative Therapies). Each have similar products but are unique in several different ways, to include total cost (one is $15,500 while the other is $23,000). Restorative Therapies is visiting our home tomorrow to demonstrate theirs (labeled RT-300) and take some measurements for fitting Ryan. Getting this set up was one of the greatest frustrations and time consumers of the week. The paperwork was endless as we kept responding to information requests that were nothing more than satisfying the therapy company’s internal procedures. We plowed through it (several times). Anyhow, I set up a targeted fundraiser about a month ago in hopes to get contributions to help us offset this cost. You can view the fundraiser here, which has raised almost $2,300 so far!
- Greenfield IVC Filter. Our doctor spoke with the vascular surgeon, Dr. Alexandre D’Audiffret of Ruby Memorial, who implanted the filter just days after Ryan was brutally attacked. This filter’s sole purpose is to catch any blood clots that might break free in the legs from reaching the heart. Early on Ryan did develop clots, but none ever broke free and this hasn’t occurred in well over 18 months (likely because Ryan so active). Anyhow, Dr. D’Audiffret feels that Ryan’s current clinical scenario does not pose concerning risks at this time. In fact, he says to pull out the filter requires extensive surgery and would pose a significant risk to Ryan. Just to be safe, we scheduled an appointment at the end of the month with a local vascular surgeon for another opinion.
- Osteoporosis. Earlier in March, Ryan was diagnosed with osteoporosis. The initial treatment is: 1) continue extensive physical therapy with Ryan, 2) significantly increase calcium by more than six-fold, 3) replace Nexium with Zantac, that we already did, and 4) FES therapy, which is the greatest potential benefit, as described above. Another DEXA scan (to measure bone density) will be performed in six months to evaluate any positive or negative changes. It’s possible that Ryan might need to go on “bone drugs” at some point.
- Outside Time . We are having an incredibly warm March here in Northern Virginia. This, combined with decent pollen and ozone, allowed Ryan to spend time outside on the patio nearly every day last week.
- Forearm. Further analysis of x-Rays gave some good news. The ulna (the larger of the two forearm bones) is quite stable in the weight-bearing part of the bone. A non-union still exists on an outer region, but calcification is continuing to form.
- HBOT. Ryan is seven days in to his thirty day Hyperbaric Oxygen Treatment (HBOT) cycle. This cycle will end on April 9.
- Femur. For all purposes, it is healed. The orthopedic surgeon spoke with me last week and is pleased.
- Comfortable Nights. This past week, to include last night, was a good one for Ryan. His coughing was minimal and he seemed to be resting.
- Allergy Tests. As part of last week’s blood draw we had a two more panels run. One to test for six basic food allergies and another to test twenty-seven common environmental allergies for our area. Great news. All results were negative!
Ken, I check on Ryan every single day. I think your writing is a healthy thing for you and a way to stay connected to others as much as it is as way to keep Ryan relevant.
Public speaking esp. on college campuses would be a great idea.
Don’t take down the blog or wishlist.
I share your update everytime you post one directly in the body of YGR’s daily email. Those 105 people (our YGR group) are reading everyday. They just are not visiting the blog since our group prays for many individuals, we decided a while back, that we would keep people reading updates if they were right in the YGR email and they did not have to click to other sites. It has worked and the group has stuck together. I also include your blog link at the bottom of my YGR email along with the other blogs of those we are praying for.
Anytime you ask for a special request we highlight it for several days-like the exercise equipment.
Ryan has touched our hearts and we are staying with you.
I am guilty of not commenting lately.I check the website daily and sometimes more,reading the blogs and I love the comment section.There are so many out here that care so much about Ryan,You,Sue and Kari.You are doing an amazing job with Ryan and you all will always be relevant to me. Sometimes I want to post but just do not know what to say. Still here in Charleston WV still praying and will continue to do so!!!
Good evening Ken,
Please don’t quit blogging or stop the comments section. Believe it or not, it helps us too. As a habit, I check your site every day, and more often than not, several times a day.
You mentioned that $2300 has been raised for the Ryan’s equipment. That tells me that Ryan remains relevant, Ken. Also, people have been able to participate in the online fund raisers that have been advertised here and on your Facebook page. I love pointing and clicking! And I bet others do too.
I agree that speaking out against violence and Ryan’s attack would be great therapy for you, and would also get Ryan’s name out there. Perhaps you could start in the high school arena. Maybe talk to some of the local schools/counties and ask if you can set up some speaking engagements. Heck, we could even start something like M.A.D.D. did. With that kind of visibility, surely press would want to get involved and that opens up even more opportunities.
Please know that there are many of us who pray for you, Sue, Ryan and Kari. And though we don’t post every day it doesn’t mean you are not thought of or relevant.
SHSP, NGA
Love,
Carla
I too check the blog everyday and love the comments section!! Don’t stop!!
Got it Ken. I see I just didn’t know where to find things. As you can see, I am such a Techno-tard! Ugh!!! Bear with me please!
I have always thought you could make an impact going out and speaking to the public about senseless violence and bad decisions that can change your life in a minute. It might be therapeutic for you too – to really make a difference. It is another way to make something positive out of all this. You can do it – take the first step.
I agree ,Ken, I think you would do a lot of good to speak in public and it might help you to feel a little better (But ,Where’s the time???) you’ll find it ,you always do. Who better to hear it from, about all this senseless violence and how life changes in a second.I say GOOD LUCK!!!
Gail
Like Peggie, I don’t have Facebook, either. I check the blog every day to see how you and Ryan are doing. I think the blog serves a unique function: it gives us a valuable glimpse into the everyday life, frustrations and joys of your family. It may not be drawing numbers anymore, but for those who have been drawn, it inspires us to care, continue praying, and help in whatever ways we can. Please don’t discontinue it. You and Ryan are a part of our lives! Thanks for calling our attention to the Wish List again, by the way.
I agree with Bonnie, I am usually prompted to come here and catch up on your news when I see the update on facebook. Right around the time she saw it I did too! Great news above…especially the allergy tests. I would hate for you guys to have to limit your time outside.
I’m not a Facebook person. And Itoo haven’t seen the wish list for some time. Maybe things changed from what we seen our end without you even knowing it when you changed the website format a little while ago. I do like your idea about speaking out about violence to a more public audience through another forum too (whatever that might be), but keep the website too please. It feels like family here.
Glad to hear that Ryan seems to be more comfortable lately. So happy to know the reductions have been successful…who would have thought… Just amazing! Please know that while I have not been posting lately, I do continue to pray for Ryan fervently every day. I hope you can take some comfort in knowing that prayer for Ryan has been the main focus of my Lenten offering this year. I have been offering up prayer through the rosary several times since Ash Wednesday specifically for Ryan’s comfort and healing and for your continued strength Ken as well as the continuance of loving support for Sue and Kari. All of the Divineys remain in our thoughts and prayers. But most importantly for you to know…Ryan remains extremely relevant to all of us in you blog extended family.
Love, Peggie
Ken, Please don’t stop blogs ,I think so many people keep up with them ,even if they don’t always respond! Ryan and your family will never fade into background ,there are too many people so very ,very interested in Ryan and his getting better .By the way ,I never see wish list,things are harder to find with new “timeline”(don’t like it ,but guess we’ll all have to use soon)Keep up the good work you’ve been doing with blogs,it really keeps us aware of how Ryan and you all are doing.Hoping reduction goes smooth.And so glad arm and femur are healing properly.A good idea to get second opinion about filter and always praying Ryan’s bones get stronger ,you’re sure doing all the right things.It’s hard to stay strong .but you can do it,You all have “The Right Stuff” Hope those cars can be fixed Say Hi to Ryan Love Gail
The Wish List in right here on this website. Today, like many other days, a quick view is given immediately after the body of the day’s post. It’s also a permanent choice in the website’s menu (look in the upper right). You did get me thinking… maybe I can add this to Facebook somehow?
Ken ,Today Wish List was there but hasn’t been other days ,ok now as long as it’s there
Ken – I check on Ryan every day, usually prompted by something that appears in my Facebook newsfeed. But over the past week or so I haven’t seen anything. I realized I hadn’t checked for a while and came directly to the blog. Maybe you should go back to posting the blog link on FB?
I do post the link to FB everyday, but maybe I need to place it on the “Highlights” page. I’ll do that now.
Yep, just came up in my newsfeed. Are you doing anything on Twitter? That may be another way to add followers and drive them to the blog.
A Twitter sign-up link is on the lower-right of every page on the website. I have it so anytime I put out a post it sends to people on Twitter.
We’re still here Ken. I am one of the ones guilty of not posting lately. Feeling a bit off lately and didn’t want any negativity coming through with my posts. I do check in on Ryan every day. Please don’t stop the “Comments” section. I’m back….And you are doing a fantastic job,as always, with Ryan. Love, Peggie
It’s more widespread than just the comments. Views are down. Ryan’s Wish List is rarely visited (or used). Average time on the site is low. Many indicators are poor.
Well, really, it’s everything screaming at me that Ryan and my family are slowly fading into the background. I need to find a way to change this and I’m not sure this website is the means any longer. I don’t think I’d ever take the site down entirely, but maybe just the “blog” section. Maybe I need to go into the public and speak? Maybe I need to become more broad and address violence and brain injury in general terms? Perhaps, Ryan can return to relevance if I find another approach…
Ken, I have sometimes felt the same way about Courtney’s page. I realize that people get busy but sometimes the encouragement from everyone is really needed. I check on Ryan everyday, I dont post much but I think you understand how much care is involved in TBI. Courtney is home now with the family and we are loving it. I am with everyone else, dont stop the blog. You help me realize I can do this. I can be what she needs to be for her right now. I know God gives me the strength everyday to continue. Ken we love Ryan and he will always be relevant. “You Got this” Love Becky and Courtney
Hi Ken,
Ryan will *always* be relevant to a great many of us — more people are out there talking about Ryan (in a caring, positive, hopeful way) than you might know. A lot of them just don’t like to write (they’re not the writing type I guess). Some of them don’t go on the computer much. But they are talking about him, and they care about him.
Your thought about doing public speaking is excellent. I’ve been hoping for a long time you’d consider that. It would be a way to educate and inform people about the tremendous suffering caused by violence, as well as help keep Ryan in the public eye. Another suggestion which I know probably sounds daunting is — a book. You’ve definitely got a book in you, Ken, and it would be amazing. I know this isn’t anywhere on your priority list right now because of everything already on your plate — but –down the road I hope!
My thoughts — people may get caught up in life — their own families/activities/jobs/etc. — but, once a person has met Ryan Diviney, I doubt he ever leaves their heart. I think about him, and pray for him and your family every day.
This is a shout out to all of Team Diviney. We’ve all known that Ryan’s recovery would happen over the course of years — because that’s how traumatic brain injury is — healing comes in fits and starts, and no two injuries are alike. Ryan is very special in that he has parents who are doing everything humanely possible to help him recover. Ryan is also a very strong, tenacious young man, and believe me, he is fighting with everything in him. Please don’t stop believing in Ryan. He is depending on us!!!
Good Morning!
Just wanted to say I am still here keeping updated on Ryan, a bit quiet lately, but still here. Sorry about the cars….know the scenario well. With two kids we have four cars that seem to all go berserk at the same time.
News about Ryan sounds good…..credit going to the love and care of you and Sue.
Enjoy the spring weather!
Don’t worry, it seems everyone has been quiet lately. I’m actually thinking about stopping the comments section entirely (especially after only hearing from one person yesterday). Perhaps this website doesn’t serve a purpose — or the same purpose — any more. I need to find another way to bring interest back to Ryan.
No, no….don’t stop!! This website serves a purpose for Ryan, you, and all of us.
Hi Ken, I wrote a long post here yesterday, hit “submit,” and nothing showed up! I thought, “uh oh, was it something I said,” lol — then I thought, “nah, Ken let’s people say what they think.” Strange. Later in the day I checked again, my post still wasn’t there, I figured you might be working on the website. Anywho — wondered if anyone else out there had the same experience.
Please don’t stop the comments section!!!