Tuesday, April 29, 2008

Cory Szot in heaven

We got "that phone call" this past Sunday morning from Dan's Grandma Pat, who told us the surprising news that Dan's younger cousin Cory had died in his sleep. His dad, Tim, went in early that morning to wake him, to get ready for the Special Olympics that Cory was going to compete in, but Cory's 15 year fight against Muscular Dystrophy had ended.

"Surprising" because Cory's family had been at our condo for Easter, he helped hide the Easter eggs around the condos, as he was very fast in his wheel chair tooling up & down the wide hallways. His body was shutting down rapidly. Cory was always quiet, and reserved, thoughtful, very accepting of MD as his "lot in life". BUT, ask him a question about most sports [yes he was a Cubs fan too] and he could rattle off stats, that you did not even know existed.

Cory in wheelchair-lower left

He was visibly shaken up the first few times, that he visited his cousin Dan, at the hospital and rehabilitation last year. He knew all too well, the difficulties of being handicapped, and it broke his heart to see his big, tall, strong cousin, Dan, in this crippled condition. There is an unspoken language of understanding and empathy, between handicapped people, when meet each other.

His "Make a Wish" was to see NASCAR Tony Kannan, which he did a few years ago, [Jen's Blog has a great photo and sweet tribute to her cousin], and I remember thinking, "that seems premature, he's not even close to dying". Yet, look how his life has passed so quickly. Or as James 4:14 says "Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes."

Keep Cory's family, Tim & Diane, Nicole, Natalie & Josh in your thoughts and prayer these next few weeks, as the reality of their loss settles in. We will all miss him.

Any notes for Tim & Diane can be left on the this local newspapers web site, or we can forward emails to the family, if you send it to checkinondan@gmail.com

Saturday, April 26, 2008

A visit to the RIC

This past week Dan visited Rehabilitation Institute of Chicago, to see Dr David Chen, the head of Spinal Cord Injuries at the RIC and Northwestern Memorial Hospital.
Our spinal cord doctor in the burbs thought that Dr. Chen might shed some light on a few of Dan's current medical issues.
  • spasms
  • spasm medications
  • new SCI therapies or studies
  • and a sore shoulder
We were encouraged to continue with most of his current medications, increasing one and decreasing another. It was suggested that the nurses and therapists use heat on his sore shoulder before doing the "range of motion" therapies.

There were no suggestions of new SCI therapies or studies which was a bit disappointing. We chalked it up to the methodology of rehabilitation institutions as we explained a few blogs ago.
[See Rummerfield, KKI, and Dan's future]

We then headed to the 5th floor to see the familiar faces of those who helped Dan those fragile first 5 months. Dr Sisung, a few nurses, therapists: Joe - respiratory, Jennifer- Occupational, Kate - Speech, and PCT's [daily care givers] : Linda, Glennie, & Kim.

Everyone thought Dan looked great, better color & weight, were encouraged about his getting ready for CU in the fall, and were VERY interested in his pacer. Thanks John Parsons, Head of Respiratory Therapy at RIC, for steering Dan and us toward the Diaphragm Pacer. Dan is only their 2nd SCI guy with a DPS. Laszlo Nagy was the first RIC guy / DPS recipient and 4th in the world, after Christopher Reeves.

The ride home brought on the subject of food and shopping, [not Michigan Avenue this time] but Woodfield Mall [still the world's largest retail shopping mall] and guess what store we found?

The CUBS Clubhouse Shop. Yes, we all found something for the 2008 winning season. Hats, a car decals, outfits, etc. Ahhh life is good.


Sunday, April 20, 2008

Information from Jen's blog, as in Dan's sister, who lives near Baltimore. Dan had her attend this Working 2 Walk conference on his behalf. Read on. [Love the T-shirt Jen. LOL]

"Sunday was a rather out of the ordinary Sunday for me. I got the great opportunity to go to the Working 2 Walk seminar in Washington, DC. People from all over the county came to hear about the latest research and testing in finding a cure for Spinal Cord Injuries (SCI). Some of the most renowned doctors in this field were there giving sessions on their research. It was absolutely fascinating what they are doing with transplanting cells into the spinal cord and re-growing parts of neurons damaged by an injury. Although a potential cure is still many years off, it is a booming time for SCI research.

One of the biggest things I got out of this seminar was a reminder that I need to be proactive about researching - not only about SCI and current related research, but about all kinds of subjects. I was definitely not designed to be a scientist or doctor, but I find it all absolutely fascinating. It was a good kick in the pants for me to stop being lazy and to take advantage of endless resources out there!!

Talking about what our family has been through the last year is something I love to do. Not to gain pity or with any sort of pride at our status, but because one cannot tell our story without speaking of the faithfulness of God. (It's practically heresy or atheism to leave out how His hand guided every detail!) People at the conference kept talking about how effective your personal story can be in bringing about change. I love to hear people's stories and to relate with them where possible. This seminar was a great opportunity for that. I even had the opportunity to share God's truth with a woman who asked "So how do you deal with the fact that it happened when he was on a mission's trip? Deal with it with God I mean." I just shared that we believe God to be in control and still just as loving and gracious as ever. She was very wowed. I look forward to having more conversations with her of this nature.

It was a good day for me not only to be able to say over and over how God has had His hand in our whole story, but to make great connections with others affected by SCI. In addition, I gained incredible information about current research and potential treatments and expanded my understanding of SCI much further. I learned so much at this seminar and would love to share it with anyone else interested (I think Mom's already heard some of it about 3 times!)

I heard it said several times that Christopher Reeve gave a face to paralysis. It often takes a celebrity to do that. Well, I have a new desire to be a part of further encouraging awareness of paralysis, not only of the details, and yes, difficulty of a SCI, but what can come through the tragedy - the great life lessons and hope; not just in a cure, but in the Lord."

Thursday, April 17, 2008

Much Better

Dan is feeling much better today. Yesterday he was pretty pale and had very low blood pressure. Thank you for praying. :o)

Wednesday, April 16, 2008

100 Days

Happy News
Today marks Dan's 100th day of non-stop pacing!! Although it was slow to work up to being off the vent full time, now he never wants to be back on. When we had a slight concern about a pacer wire the other day, Dan just wanted it taken care of so he would not have to go to the vent. Going back and forth used to make him dizzy. And for Mom and Dad, well, we sort of hated the tubes.
Sad News
Dan is sick. We're hoping it's just a "bug" that's going around, but even that hits a SCI patient harder than the rest of us. He feels pretty much "out of it."

Saturday, April 12, 2008

CUBS, Classes, Construction

It's that time of year at the Knudsen's -- CUBS season!! Dan never misses a game! He, of course, knows what time every game starts, so we're ready each day. If we're not able to sit and watch it with him, he calls us in to see the replay of every home run or great play.

We're excited that Dan is registered for his two online classes which will start soon. We actually can't wait to hear what he's learning.

Our house is coming along! We stop by every few days to take pictures. We plan to move some time in May! Day 128

Thank you to Dan's friends for stopping by.

Thursday, April 3, 2008

Rummerfield, KKI, and Dan's future

HELLO. Anybody still out there? Would somebody post something? OKAY, updates.

Last Wednesday, Dan got a phone call from Pat Rummerfield [who?] Well, he is a spokes person and on brochures for the Kennedy Krieger Institute [KKI] and is sort of famous in the Quad world, because he is a walking Quad. Yes, he is a C3, C4, C5, C6 and still missing 85% of his spinal cord in one section. 4 of us gathered around the cell phone and peppered Pat with questions. Dan had lots of questions, too.
  • How come you don't hear about results from many Spinal Cord Injuries (SCI)? [There are many, it's not the biggest news maker when a quad starts moving his finger or hand]
  • What's up with going after a racing certification? [Racing draws more attention to SCI and it's easier on my body]
  • Do you have spasms [only for 30 seconds in the morning, before therapies & workout]
  • Are you on any anti spasm drugs? [NONE]
  • Were you ever on a vent? [NO, but should have, Dr's were waiting for me to die from my injuries and didn't want to "complicate things"]
Many people have sent us many stories about Quads. We do appreciate all of them, but when Dr's call Dan a C1 & C2 "complete", there is not much in the way of hope ... until we caught up with this place. There is a learning curve with all that is constantly flying past us, so not all of it sticks to our brains the first go around. Our hats are off, with deep admiration, to families and quads who are 3 ... 4 ... 5 [Alex M], and 9 years [John M] into their injuries.

It just so happened that during Deb's spring break we had planned a trip to Baltimore to visit the "still newly weds" AND KKI. The International Center for Spinal Cord Injury (ICSCI) at Kennedy Krieger Institute [part of John Hopkins] was founded on the philosophy that individuals with paralysis can always hope for recovery of sensation, function, mobility and independence, even many months or years after their injuries. We were blown away with the people, directors, and therapists and their forward thinking in regards to SCI. "We don't use the word 'complete'" . The best thing is that they feel they can help Dan go to the "next level" and would like him to come for a 2 week evaluation and consultation by doctors and therapists. It would also include aggressive therapies.

Even though the spinal cord cannot heal itself, KKI has seen nerves that do regenerate around the injured area, causing positive results. Most SCI doctors and rehabilitation centers have the attitude of "you have this level of injury, here is what you will or will not be able to do, and we can help you adapt to that new "disability". KKI works to push the traditional rehabilitation mindset, by trying any and everything, doing research, traveling the globe when they hear of possible "cures". The application of electric stimulus to muscles has shown promising results -- just
like Dan's pacer which stimulates his diaphragm to breathe. Take a look at this KKI video.

So pray for:
  1. the insurance to be on board with this new round of therapies
  2. the logistics of travel, hospital or hotel stay, etc.
  3. this can happen as early as May.
Stay tuned. :D

PS. Dan has a minor cold. It is a pnuemonia type, that has produced alot of mucus which needs suctioning and use of the "cough-alator" machine frequently during the day.