Kari
At this very instance, Kari should be in transit from WVU to our home. If she left when planned (8:00 AM), she will be just under halfway.
That’s a BIG “should be” and “if”. She is notorious for being late. Like the cable company (and hospitals, I might add), this is just a general approximation. It essentially means: I will leave no sooner than 8:00 AM, but please allow a four-hour window for this to actually occur. So, what this means to me is I’ll get to hug her sometime between 11:30 AM and 3:30 PM.
I do look forward to having her company throughout the day. She also will hang out with us many nights. Just talking and bringing laughter that fills the house. In this way, her and Ryan were similar. We had a home filled with love, laughter, and conversation. We would have fierce debates while Sue did her best to act as the referee (without much success). When done, we would almost instinctively begin ribbing each other, bringing humor to the forefront. I can’t tell you how much I miss this. So much, it hurts.
Nutrition
I don’t want to dislocate my shoulder patting myself on the back, but…
I am quickly approaching a blenderized (again, is that even a word) formula that delivers over 100% of the daily dose of the essential vitamins and minerals in a single 250 ml feed. I have this down to the amino acid level (components of protein)!
It gets so complicated. The trade-offs between foods are mind-boggling. Then, I must pay attention to not exceeding the sometimes recommended upper-limits, or this can cause discomfort or some weird outcomes (like dandruff, for instance).
If this mixture didn’t taste so awful (yes, I try it), I would recommend it for everyone. It’s crazy healthy.
I also calculate some other neat and helpful measurements I’ve self-taught. Some examples include: Estimated Glycemic Load, Inflammation Factor, Nutrient Balance Index, Protein Quality, Fullness Factor, and Nutrient Density. Really amazing and fascinating stuff, for those who like to understand how things work. For anyone interested, there is a very detailed website, SelfNutritionData, that I found the most helpful.
Infrared (LED) Therapy
We have used some of the money ($5,000) that people have generously donated to us to buy a helmet through IBRF that provides infrared therapy. The best way it can be described is akin to Darth Vader mask. It has a stand it attaches to that looks like a beauty salon hair dryer. Here is a picture:
http://www.emersonww.com/InfraredHelmet.htm
There has been a great deal of recent research into this therapy. In fact, another article came out today in Science Daily (I read it everyday for the most up-to-date medical breakthroughs and research) about its effectiveness for brain injured people.
Arm
I am still extremely skeptical about the recovery of Ryan’s forearm. We will know more when he gets it x-Rayed in a couple weeks. In the meantime, Dr. Rodriguez has ordered an ultrasonic bone simulator that will be delivered and demonstrated today (at noon).
This device speeds the recovery of fractures. My concern is what if it heals it, but the angulation (again, I might be making-up words) is not proper? Do we really want to heal his arm with a crook in it? What’s that mean down the line? Will we have to re-break and set it? Anyhow, you see my point… right?
You’re the man, Ken, and you absolutely, positive, *rock.* Enough said.
What Paula said. ‘Nuf said. SHSP.
What is SHSP. I am clueless.
Thanks
Vicky
Vicky, it means Still Here Still Praying. I am going to add another, “WH,” which means “Working Hard” to raise money for Ryan’s treatments! Ideas for fundraisers welcome, everyone!
Also, Vickie — other Team Diviney code speak includes “MOTNC” = Middle of the Night Crew; “Prayer Warriors” — anyone who prays for Ryan and his family; “SHSP NGA” = Still Here, Still Praying, Never Going Away.
Can you tell how much we love the Divineys? : )
Ken,
I know you are busy but I do appreciate all the information you share because I research it and see how it might help Jonathan (TBI 7/10/07). I am wondering if you can share the nutrient concoction with me and if it would mix well with the carrot juice we juice for him every day or the fresh fruit smoothies? I have bookmarked the sites you mentioned for research when I can but if you give me the formula, that would be helpful. Quite frankly, as is evident by Karen’s post and others who have written, there are many of us out there taking care of 24/7 our traumatic brain injured children. I have spent the last almost 4 years researching when I can even for sites of others who have started the walk before me so I could use the information without re-inventing the wheel. Thank you for all the information you share. It helps me help Jonathan. We are a hidden group and few know we exist. Hopefully we can help each other make our children’s lives better (and all those out there who are caregivers for parents, others.)
Vicky
Vicky, check your email.
Ken,
I laughed at your comment regarding Sue being the referee and not being very successful:). I too referee the debates in our family and still end up “giving up” when I clearly am not makng any progress. Your knowledge of nutrition is a powerful statement of your dedication to making sure Ryan has the best chance of recovery. I will certainly be checking out the website to increase my awareness of how to better care for myself and my family. I know your sweet Kari is going to bring a lot of much needed laughter and joy during her visit. Isn’t it amazing the overpowering love we have for our children! It actually hurts sometimes.
I know many people respond to your posts and check in with you on Ryan’s FB page. Do you know how many people your family has touched? I remember asking myself one day “Why does this family affect you so much, you have never actually met them?”. I did not have a solid answer. All I know is that from the moment I heard about Ryan, your family became an integral part of my life. I have mourned for you, prayed for you, cried (more than once) and rejoiced when I received the best birthday gift, that being that Ryan’s attackers where convicted on July 19th, my 44th birthday. Though life rarely gives us things we can truly count on, you can be assured that I will remain dedicated to Ryan and your family in any way I can. I will be a “prayer warrior” for as long as it takes.
Give Kari, Sue and Ryan a hug from their #1 fan! Always SHSP! Much love~Jen
I have to agree with you. It’s strange how this family I’ve never met has impacted me so much, but they have. There’s just something beautiful in the pure, unconditional love that the Divinelys have for their children, and it’s a pleasure to read about. In a world so full of hate and despair, it’s nice to read about a Dad who would walk to end of the Earth for his son, and has done so, in a figurative sense.
And we are “Still here” with hope, faith, love and, for sure,
Ryan’s Prayer Warriors!
Dear Ken, Hope Kari got home safely and you all enjoy this time together.Ryan will be so excited to see her .I hope there ‘s a sign that he knows she ‘s home. I ‘ m amazed what you know about nutrition ,Ryan will stay very healthy……….Have a wonderful week and hope Ryan stays well. Say hi to all. Gail. SHSP
Ken, I have walked in your shoes for the past 8 years the exception being it was my daughter, Kerri having a brain injury. She has an anoxic brain injury. It has been a long 8 years, but yet I am still so thankful that she is here with me. It’s like my second chance at parenting, but then once you have children, you are always a parent. Not like some people who open the door at 18 and tell their kids they are on their own.
My daughter was a bright, beautiful vibrant young woman 0f 20 and also a college student when she was stricken with a minor case of the flu. A week later she came down with Guillain Barre Syndrome, a temporary fluke syndrome that affects 1 in 100,000 people. It causes a temporary paralysis and can engulf the entire nervous system in varying degrees. They hospitalize you because your chest muscles have a potential to collapse. Kerri was strong (gymnast, ROTC) and initially it never progressed to her chest, just her arms and legs. She went to rehab at the 9th ranked rehab facility in the country. In 6 days, she regressed. When she couldn’t breathe, the doctors and nurses ignored her and told her she was having an anxiety attack and just wanted attention. She coded right in front of me. If they had intubated her in a timely manner with a $7.00 piece of plastic, she would be fine today. Instead, she suffered an anoxic brain injury, as a result of respiratory arrest, then cardiac arrest. It tok 21 minutes to resuscitate her.
I just want to tell you to never give up. A lot of people do, and I respect their decision but they aren’t me. I know my daughter would never give up on me and so that is how I feel with her. When I brought her home she was non-responsive. Today she is 30 % conscious at times and alert, aware at times, and healthy. We whittled that drug box down to just 2 meds. She talks a little. We are getting there. Slowly.
I learned to let go of my hatred for those at the hospital. We spent 3 and a half years in court with a malpractice suit and 4 days before we were to go to trial they settled with us for what we wanted. It isn’t about the money. It’s about peace of mind. Many people tell my husband and I that we are heroes. But my daughter is the real hero.
What I have to say to you is to let your anger go to whom did this to your son. It will eat at you until you do. I can say this because I know exactly what you are going through and how you feel. Also it was January 9 for me like it was November 7 for you. You should focus on not letting that date every month have that power over you.
Easier said than done I know.
I take care of my daughter and I know she is a true blessing in my life. I have truly learned patience, humility and what is really important in life. I would sacrifice anything to have my daughter smile at me just once. God bless you and your family. Hang in there.
Karen
Miracles happen all the time! Karen, this story sounds so familiar to me. Can you please tell me what state you live in? Do you have a website? I will pray for you and your family. I
My heart broke for you as I read about your beautiful daughter. I would imagine that you have an insight into the Diviney’s frustration, anger, sadness and even joy at the small and large improvements in Ryan’s healing. I agree with your opinion of letting go of the anger towards his attackers, much easier said than done. I am a strong Christian, but would find that extremely difficult. May you cherish your daughter and continue to keep Ken, Ryan, Sue and Kari in your heart and prayers. God Bless~
Thank you, Karen for sharing. A couple, whose son came into the hospital with a TBI 11 days after our son’s TBI, struggled with anger, especially the father. We have remained friends and recently they shared this story. They take their son to a school for a couple of hours a couple of times a week and met a family whose son had cerebral palsy and requires 24/7 care. My friend asked the father of that child how he did it every day and the father who is actually the step-father said… ” I wake up every morning, and my goal is to see how I can make my son’s life better for the day.” That statement made a profound impact on our friend, who was able to release his anger and has moved forward… the difference in how he looks and acts is amazing.
May the Lord bless you as you continue your journey with your precious daughter.
Vicky Scott
What an exciting day you have to look forward to! Still here.