Yesterday started out rough. Then… it got rougher. We were told the results of Ryan’s dexascan (bone density test).
Last year at this time we learned Ryan had osteopenia. This means the bones are not normal, but haven’t progressed to osteoporosis. We made a ton of changes to his diet (mainly calcium) and therapy. I placed emphasis on weight-bearing exercises and used the standing frame everyday.
I suppose I knew from the femur fracture that things were not looking good. With the ulna (forearm) not completely joining after a full year it just made it all the more clear. I was just holding out hope that Ryan’s bones might not be as bad as it seemed. I was wrong. Like most things with brain injury, hopes are easily squashed. Ryan does, in fact, have osteoporosis.
Now comes the treatment with more drugs to increase bone density (or, at least, slow it’s deterioration) and different drugs (like Zantac) to treat other conditions. The simple truth is the best way for Ryan to recover (to some extent) is to put the bones under desirable physical stress. They must continue to bear weight. Just as importantly, they need to be pulled by his muscles during physical activity, something passive exercise simply can never give.
Shown with leg stimulation
There is a possible solution with a therapy device called MotoMed FES (electrical stimulation), or others that are even more deluxe, that IBRF wants us to buy. Aside from increasing bone density, it provides cardio benefits by electrically working the muscles, and might help Ryan relearn movement. I listed this as a fundraiser recently and people contributed almost $1,300 toward its cost of $9,200 (likely more). There is no doubt Ryan will get this, because he must. But, we sure could use help. The sooner, the better since it seems to take forever to get equipment once it’s ordered.
I’m asking everyone, if you are able, please help us in getting this. Like everything, it will be channeled through Ryan’s Special Needs Trust Fund. People can mail us their contribution (Ryan Diviney SNT, %MotoMed, 21092 Carthagena Ct., Ashburn, VA 20147) or through Ryan’s FaceBook Fan page (or just read about it), via PayPal by clicking here.
Ken:
I have osteoporosis and have been on several prescription medications for treatment over the past decade. In September of 2010, I was given a new osteoporosis medication,a twice a year injectable called Prolia. PLEASE do not even try this for Ryan. I now have chronic pancreatitis which is a side effect of Prolia. Having been an avid reader of your website for quite some time now, I know how careful both you and Sue are with medications and treatments for Ryan. If someone had told me of the side effects of the Prolia, I would not have allowed my doctor to give me the injection.
My prayers are with all of you, every day. Enjoy your time with Kari. May God Bless.
Thank you!
Wow,interesting posts. As a nurse, and a mom, my first thought, that should supercede all others in my thinking, is taking Ryan anywhere, for any reason, is such a risk to his health. So many germs, and what would be a short term, minor illness to most, could be so overwhelming for Ryan. Ken, you and your family work so hard to keep Ryan healthy, and I know minimizing his trips out to avoid bringing illness home is a key part of the success of your care for Ryan. Certainly taking him out for therapy on a regular basis would indeed be exhausting, and put him at incredible risks for illness that would negate any benefit of therapy.
Praying for all the details to fall in to place so you can quickly get the MotoMed. I think it will be an awesome addition to the therapy options you have at home to keep Ryan fit, and strenghthen his muscles and bones!
“I don’t know what you are talking about.” Then Mary, you could not fathom my lack of patience for Kiki’s (continued) insensitivity towards Ken. The sad fact is there are a couple of trolls who show up at their whim to give a dig at Ken. He doesn’t need it, he doesn’t deserve it, and yes, I may choose to call out the offender as being a troll or perhaps even, a jerk.
“The Holy Bible should be used for guidance, self reflection and inspiration rather than as a tool for debate and finger pointing like the Pharisees.” I don’t believe I used the Bible to finger point == not sure how you feel at liberty to make that kind of accusation. As I said, I will stand up for Ken at all times, and I think your desire to chastize me for that because I am a Christian is — judgemental in and of itself as well as inappropriate.
Now I am wondering, what are your motivations for doing this? If you don’t like my opinion I understand. The fact that I am a Christian does not disallow me to express anger towards those who choose to deliberately inflict additional emotional anguish upon Ken.
“Don’t put yourself on a higher plane.” I’m certainly not. But there is such a thing as a righteous anger, and if I see, hear or believe someone is purposefully adding to Ken’s pain, I will address it.
Paula,
I was referring to Scripture quoted after past blogs, by people who then went on to say mean things. I am a Christian. An Orthodox Christian and have no interest in chastisizing. If it makes you feel righteous to think my motivations in donating money, meals and time to fundraisers, sinister…go right ahead. I will continue to suppport this family regardless. I have been reading the blogs and silently supporting since the beginning. I have no need for your approval and won’t continue to engage an irrational, angry woman any further.
“If it makes you feel righteous to think my motivations in donating money, meals and time to fundraisers, sinister…go right ahead.” Mary, I am at a loss as to how you arrived at this conclusion. I only have the *highest* regard for every person who supports the Divineys, yourself included.
You did not like the way I stood up for Ken because you felt I was mean. There aren’t too many things that upset me — but seeing any kind of attacks on Ken will definitely make me angry. I’m sorry if this offends you, but I honestly don’t think I can help myself. If Ken hurts, I hurt too.
Hi Ken,
I almost was able to go to bed without putting in my two cents about Kiki’s comment. Anyway, because I know from experience the incredible effort to take one’s child out when they are minimally conscious or less, I believe you, Ken are doing an extraordinary job of caring for your son.
Kiki,It may be hard to believe, but doctors and therapists often refuse to care for someone like Ryan. His battle is a very difficult one and a challenge for any doctor or therapist so they don’t even try. Also insurance doesn’t cover it. So why would anyone drag their child out to someone who doesn’t believe they can help and doesn’t want to even try. Kiki if you are reading this and want to really help, make brain injury therapy or disorders of consciousness, something that should be recognized and covered by insurance. Because, God forbid this happens to someone you love, and you are left to care for them by yourself, you will realize Ken needs support! Okay now I can go to sleep,now that I put my two cents in.
Ken still believe you are doing the best job possible.
Vivian
Ken,
As a neighbor and person who has contributed hundreds of dollars through various fundraisers for Ryan’s care, I feel you shouldn’t encourage supporters to berate those who offer input that may differ from most. As a person who has also suffered unimaginable trajedy, I empathize with your pain. You are creating a new normal and doing the best you can to cope and care for your son in the best way possible. Most of us parental units would do the same in your shoes. Your life has been forever changed and you are doing the best you can to create a new normal. We understand that. Kiki’s input wasn’t so out there. In my family trajedy, as I suffered through things even you might not understand, neither may she understand the the details you have to consider. You were reflective and apologetic several blogs ago about what you may be saying to upset people…..your response to Kiki is an example. She isn’t the first commentator you tore apart. Your responses fire up the mob to attack and frankly, it’s quite surprising behavior for Christians. I will continue to pray for Ryan’s progress and all else you need to lift you up and get you through the toughtest days. I’m going to brace myself now for the firestorm of negative responses.
I would be surprised if people take offense to you comment. It’s sincere and on topic.
I was hoping I didn’t upset you. I appreciate your response. God Bless.
Dear Mary, by the content of your post, I can see you have failed to read some of “Kiki’s” past musings. If you had read them, I think you would understand Ken’s (and mine and others) response to her recent comments. Or, perhaps, you have read those earlier posts, and are choosing to ignore their insensitive nature (?). Kiki was clear to emphasize her assessment that because Ken has a “patio, van and ramp” he should be able to fix this problem — after all, he has been given so much (right, Kiki?) Never mind all that has been lost — too much for anyone to fully grasp.
Mary, it is very generous and kind of you to contribute so much to Ryan’s care. I’m sure he would thank you himself if he could. Because you are aware of the extent of the devastation inflicted upon Ryan’s life, and upon the lives of his family members, it cannot be lost on you that people are very protective of the Divineys. I hope my reaction to your missive is not the veritable firestorm you anticipate. By the way, for whatever it’s worth — folks of other religious backgrounds will also stand up for Ken, Sue, Ryan and Kari…not just the Christians.
You’re right Paula, I have failed to read Kiki’s past musings. I don’t know what you are talking about. I don’t understand the purpose of name calling, such as “troll” in an effort to be “protective”. I know a lot of supporters here are Christian bc I’ve seen Scripture quoted often. The Holy Bible should be used for guidance, self reflection and inspiration rather than as a tool for debate and finger pointing like the Pharisees.
Many of us have empathy and support in every way we can even while suffering our own losses. Don’t put yourself on a higher plane.
Hmmm… …I think Kiki is young and uninformed about TBI. She can educate herself via the internet and this blog. If Kiki has lots of friends and family members, this will not likely be her last experience with TBI, unfortunately. We have 2 close family members and 2 close friends with TBI. There is much to learn and much work to be done. It is very well worth the effort it takes to get involved! Ken, your description breaks my heart and brings me to tears, but it fits.
Ken, Liked your answer to Kiki, What is wrong with people.It must be hard to read how simple this all seems to someone else, but YOU are the one going through this.. Hoping you find right medicine and DEFINITELY MotoMed machine. Somehow ,someway you will get it,,I know time is of the essence, Ryan has done so wonderfully with all you guys do for him, this would just help so much more too. WE ARE TEAM DIVINEY!!!!! Always here and always thinking of you all Love Gail
I wrote about “emotional intelligence” (and the lack thereof) and I believe it applies to her.
Methinks “KiKi” is the proverbial troll. We’re not here to frolic in the sandbox, Kiki – we’re here to do our best to support Ryan and his family. Clearly you have the compassion of a mushroom — or perhaps I am being too generous.
Several thoughts,
Rent the machine he needs
Take him 3x a week to PT that has this machine
Each time a new issue arises buying this equipment trying to duplicate an outpatient center in your home will never end. Since you have the van, patio and ramp, is it possible to take him out for this therapy? What do other people do? They cannot be duplicating all this equipment in their home. Just trying to be realistic. Praying for Ryan daily.
I am rarely put off by comments left on the website… and there have been some doozies. Yours, however, really are insensitive and poorly communicated (unless you intended to unempathetic then, by all means, good job). So, let me respond to your suggestions in the order provided:
1. Trying to duplicate an outpatient center would be foolish and is not my goal. Also foolish is the belief that any outpatient PT would accept him. But, getting home therapy equipment specific to Ryan’s healing and treatment is reasonable. And you’re right about one thing… it will never end.
2. Taking him out is no easy task. It’s not like pushing him out in a stroller and buckling him in a car seat. What do other people do? Other people do what I do, or admit them into long-term care facilities, or do nothing at all. I hope you’re not suggesting the latter two!
3. If you’re trying to be realistic, then here’s a dose of reality… Try this: get a 175 lb. column of gelatin, wrap it in an egg shell, and see how it feels to scamper to and fro. Then hope there is no bowel movement, urine catheter leak, or suctioning needed. If you really want to get the full experience, try not to let it bother you when people gawk at your gelatin with pity or think your gelatin is a freak.
Since you’re all about being realistic, that’s mine for you to consider.
You have done everything humanly possible to maintain Ryan’s bone health (along with every other part of his body), and then some. You need this therapy equipment as much as Ryan does, Ken, and we will help you get it ASAP. Love and prayers always for you, Sue, Ryan & Kari.
Ken, since Ryan needs this soon after the impending surgery, is there any chance of buying it on the old “no/low interest Easy Payment Plan.” The IBRF should work with you since this is an emergency.(but will they?). Ten thousand +/- is a lot of money to raise in a hurry, although I feel certain the donations will be coming in fast and could even be used as a down payment. Something to think about, since Ryan really needed this piece of equipment long ago.
Ken, Stwart and I feel that the misplacement of the filter was discovered so that it can be corrected. We feel sure that the replacement will be a success and Ryan will have no ill effects from the procedure. Do you know a good vascular surgeon? If you don’t, we do, and would be happy to recommend a couple (forgive me for butting in).
Lilly, Michael Professor of Surgery
Director, Non-Invasive Vascular Laboratory
——————————————————————————–
Surgery: Vascular Surgery
Read more: http://www.umm.edu/doctors/namelist_L.html#ixzz1nyIvnoNF
He is the most caring physician we know, and there are many! We really like the easy parking at this hospital, and it isn’t a bad drive. Of course, Washington Medical Center is a bit closer. I would trust them completely, but, since I’m from the south, I have to point out that UMMC has the most wonderful soul food in their cafeteria that includes chops, greens, potato salad and banana pudding!! LOL There I go — thinkin’ ’bout food again! I tried really hard not to think about good food and recipes, but then this question kept invading my mind: “Whatever happened to Linda Tripp?” Good grief! Why would I even want to know? !! Hopefully, someone will post something here to stimulate my mind. Folks, you haven’t failed me yet, so write on!
Love and prayers a-plenty on this gorgeous, sunny day. Always here.
I’m working to get it even before the cost is covered.
Right on, World’s Best Dad! Onward and upward (in other words, Git-R-Done!). Celebration in order! Let’s see, we can have grilled hamburgers, hot dogs — oh darn, there I go — food again! Wouldn’t you think I would first think about the guest list, or decorations, or the weather? But no! It’s always the food! Ken, I learned everything I know from my mom, the orginal Paula Dean. It was a big gob of butter in the carrots and a nice little pat for Mother. She loved butter, and she was the most wonderful cook! I think I would be thinner if I were from another part of the country. LOL
As you can see, I have time on my hands today. It’s because I am recovering from a flu bug. Hope this one doesn’t get y’all!
Amen Paula! Another idea is to do 50/50 raffles at high school games, club meetings (ROTARY!!), other community events. It’s easy, no overhead, and 1/2 of whatever is raised goes to Ryan. We can also get community organizations to sponsor Ryan’s Rally as one of their philanthropies. Even sororities on college campuses have philanthropies. And, in the event that a sorority (or other organization) can’t take on another philanthropy sponsorship, perhaps just a one-shot fundraiser? Let’s get the word out, Team Diviney!!!! We got this!!!!
Carla ,All those sound like great ideas ,Please let me know if I can help in any way..
Hello Ken, thank you for letting us know what’s going on. I am praying today turns out to be a much better day, and I’m very sorry that yesterday was so difficult. You all just don’t deserve this, any of it.
Okay now Ken, plug your ears for just a minute.
ATTENTION TEAM DIVINEY!!! RYAN NEEDS OUR HELP!!! I know everyone on the team has given so generously of their time, effort, material contributions, prayers and caring.
The fact that Ryan’s leg suffered a fracture as a result of routine physical therapy is a red flag that needs to be addressed now.
Team Diviney has always been there for Ryan and his family, and we’re not going to stop now!! Let’s band together to get this MotoMed for Ryan so he can continue with his recovery. He has been working very hard for over two years now to heal from the horrible attack upon him. His Mom, Dad and sister have never given up on him, and we’re not going to either.
Let’s get creative and resourceful — spread the word to friends, neighbors, the community … hold a bakesale, tupperware party, do a collection, talk to your church. We are stronger together than we are by ourselves, so let’s come together once again for Ryan and help the Divineys get him what he needs. They are counting on us!!
Thank you to all who have so kindly contributed. Your generosity is deeply appreciated. To all who have been thinking about it, I urge you to make a contribution now. Let’s help Ryan get to the next level of recovery!!
*Thank you* to the best people I’ve ever known — the people of Team Diviney!!