Monday, May 28, 2012

Remembering Another Milestone

So ... this is Jon back with you. Hope you all have a good Memorial Day and we certainly appreciate the service people have given to our armed forces. With one brother-in-law in the army and another in the navy, we see first-hand the daily sacrifices our service men and women make. And it also makes us appreciate our freedoms that much more and so thankful to those who've given so much to make it possible.

We are relaxing today after a pretty busy weekend. Saturday marked the one-year commemoration of my first full day at Hillcrest Rehabilitation. At that point, I still couldn't sit up by myself, stand on my own, move anything on my left side or dress myself. In fact, that day, I feel in the bathroom and had to have Brenda, a therapist, an aide and a nurse help me up. That may have been one of the most helpless and humiliating moments of my life. But within three weeks, I would be taking steps on my own and making slow, steady progress. We celebrated the one-year mark of that day by picking up and moving in new bedroom furniture for Jacob's room. I didn't do much lifting, but I was able to help and I am so thankful and blessed to have made that kind of improvement. Honestly, at this time last year, there was doubt that I would ever walk again, much less be able to take a mattress out of my son's room!

I don't have much else to add, but I had some free time this morning and thought I would share a little. Progress continues in both therapies. My physical therapist was impressed after a nearly month-long absence due to her illness and scheduling conflicts. Occupational therapy is also going well, with things getting a little easier and the addition of some new exercises to work on at home. Thanks so much to everyone! We'll be back soon.

Sunday, May 20, 2012

Its Been A Year ... Already!?!?!?

It seems almost impossible to believe as I type this, but one year ago today, at this exact time, I was sitting in urgent care in Belton about to embark on this incredible journey we've been on for a year! Within an hours time, I would be in the emergency room at Scott and White, completely paralyzed on my left side with a doctor telling us that I was having a massive stroke. But on the bright side, at least according to him, my "death number" was pretty close to zero. It would be four days before I ate again, five days before I was allowed to see the kids, three weeks before I could take a step on my own and a month and a half before I would leave the hospital.

I honestly cannot believe that a year has passed and I'm also not sure I can really put my feelings into words. I truly felt that the stroke was just a temporary setback and that I would be "good as new" in just a few days, or weeks at the most. It is hard not to be a little bit disappointed that I'm not further along, but I chalk that up to my unrealistic expectations and lack of understanding of just what exactly was happening inside my brain. When I put all of that into perspective and see just how far I've come, I know that I have accomplished a great deal and have so much to be proud of and even more to be thankful for. To steal a line from Lou Gehrig, I truly consider myself the luckiest man on the face of the earth.

I will never forget the way my co-workers, friends, church, extended family, people I don't even know and especially my immediate family rallied around me. I am still humbled and amazed by the outpouring of support, compassion and prayers that we received. I know I wasn't the best patient, son, father or husband during that time, but I do feel like we all passed a very difficult test and are much stronger because of it.

Over the past couple of days, I've talked to the kids and with Brenda about the things we remember from the past 12 months. I don't want to spend much time on that, though. Because even though surviving a year marks a milestone, it doesn't represent a finish line. I would much rather look forward and focus on continued recovery and the progress that is yet to come. Eventually, my therapy sessions will come to an end but not my chances (and goals) for a complete return to life as we used to know it.

Even if I never fully recover to the point of May 19th, 2011, I've still managed to achieve more than I ever thought I was capable of. And I will continue to push myself toward reaching all of those goals. I have had so much support and love throughout this adventure and I feel like I owe it to each and every one of you to give it my best. Later tonight, Brenda should post her thoughts so you can get her perspective on reaching a year, but I wanted to be first so that we could save the best for last. My intention is to continue the blog for as long as I continue to progress. Mainly because it gives me an outlet, but also because I want you all to continue to share in this with us. Thanks again to all who read this and we look forward to a second year of recovery with an eye on the same kind of gains we've made this year! Happy Anniversary everyone!

Saturday, May 5, 2012

Closing in on another milestone

Hey everybody, this is Jon back with you ... finally! Once again, I thank you for your patience and apologize for taking a month to update you. Things have been very busy as the UMHB athletic seasons wind down and the kid's school years start to wind down, too.

We are doing well. Life continues, therapy continues, and we have all settled into a routine again. I wish I could report some major breakthroughs to you, but at least I can tell you about some continued progress.

As you may remember, I had botox injections in my left arm almost a month ago. The goal was to loosen up some of the tightness in the arm and free up more movement. It seems to have worked very well in the bicep. My arm feels must looser and I have better extension and use of the upper arm. It doesn't seem to have worked quite as well in the wrist, but the therapists do notice a difference when they stretch me, so I think there's been a real benefit there, too. I have lost a small amount of my grip strength in that hand as a result of the injections, but not enough to limit my use of it. The doctors and therapists consider that to be a good trade-off, especially in light of the new, more youthful appearance of that arm! I am also amazed that so many people are willing to get those injections in their face. I make no secret of my hatred of needles, but this was one of the worst experiences I've had with them. Just so you all understand, you stick in the needle, and then move it around or push it in farther until you are sure it is in the proper position to actually do the injection. We go back in July to discuss the possibility of another round of botox. I will go on record as saying I have slightly mixed feelings about that.

I also had another MRI and follow-up with the neurologist. Once again, they see no change, which is very good news. That means I will never have to have another MRI on my brain, unless we have another "event". I will go back and see him again in a year, just to see how things are progressing. Two other things really stuck with me following that appointment. One, as we looked at the MRI, he explained that the large dark spot where the bleed occurred, is actually the equivalent of a hole in my brain. The white blood cells broke down the dead tissue and carried it away. Brain fluid then filled the space. That was fascinating to me and those of you who mentioned "a hole in my head" may have really been on to something. Two, as I tried to wrap my head around that thought, he kept re-opening the images and saying "Wow!" to himself. Once again, he explained that most people they see with damage of the sort I experienced have NO movement on one side and no real hope for regaining it. Or they didn't survive the initial bleed. We are so blessed and I know that no matter how frustrated I get in this process, I am unbelievably fortunate to be able to do what I can.

Which takes us to therapy ... in occupational therapy, the folks have started yelling "Norm!" when I walk in. Something tells me I've been coming in more regularly and often than most of their patients. But we continue to make progress. We mainly are working on strengthening muscles, regaining movement and refining the motor skills I lost. Things keep moving forward, but there are little things that I have a hard time figuring out. For example, when I try to touch my left thumb to my index finger, the thumb curls in to my palm instead of touching fingertip to fingertip. If I try to touch my thumb to my middle finger, the index finger won't get out of the way and I do not yet have the ability to isolate it. We did break out a putter and practice a little putting and chipping last week. So we are getting to the important stuff again. :) We continue to work twice a week and they are encouraged enough to stick to that schedule, so we are ALL pleased with that.

In physical therapy, we continue to meet once every two weeks. I have been officially diagnosed with a "weak booty" so I've been given exercises to work on strengthening those muscles. I am also working to strengthen my hamstring and using the elliptical machine at least three times a week. She also has seen progress and one of the therapists who hadn't seen me a while mentioned that she thought I would be walking without a limp before too much longer. I can't tell you how encouraging that was.

At home and work ... Brooke is finishing up another season of select soccer and is less than a month away from closing out elementary school. She turned 11 last month and is trying to decide if she is excited to head to middle school next year or not. Jacob just finished his first season of 7-on-7 football and really seemed to enjoy it. He's looking forward to becoming an eighth grader while we try to figure out where the years have gone. How can they possibly be at those stages in their lives???? Meanwhile Brenda continues to be the family's rock and strength. I can't understand everything she has to go through, and I know I can never thank her enough for all that she's done during our little adventure. She is an amazing woman and a true gift from God. All of the sports at UMHB have finished their seasons with the exception of women's golf. They will play in the National Tournament next week and for the first time since I was hired, I will NOT be making the trip. I just don't feel able to walk a golf course for four straight days and figured if I was going to miss one, it might as well be the one in Angola, Indiana. (No offense ... Angola, Indiana ... you just don't have the attraction of Orlando, Florida!)

We also had a chance to go to my cousin Daniel's wedding and I attended the funeral of a great man in Leonard Kiely. Those two events also helped remind me of the balance between joy and sadness in all of our lives. We are so thankful for their impact on our lives and appreciate the impact each of you has made.

I mentioned another milestone in the title, on Sunday, May 20th, we will mark the one-year anniversary (if that's the correct word) of my stroke. Once again, I cannot believe that its been a year and our lives will never be the same again. But as we look back on the past year, I see how much stronger we all are as people and as a family and I feel so humbled by the experience. Thank you again for sharing in that experience with us and for supporting us. We could not have made it without you! I will be back soon and appreciate your patience. Take care and we all send you our best!