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.


Anonymous said...

"A merry heart doeth good like a medicine" Prov

Never give up, Dan. God is on your side!!!

Anonymous said...

This is just absolutely so wonderful to hear. I knew there had to be something out there that would bring you Dan to another level. That is so cool!!! We'll be praying about the trip, the therapies and your cold.

BTW, you still have a gift we sent up with our sons waiting for you. Whenever someone can get by to pick it up... Hope it is something you'll enjoy having.

Have a nice night and sleep well.

Sergio and Janni

beth said...

Yea!!!! Isn't PAt awesome to talk to! There is much more to the man than just his recovery...just wait!

I hope you guys get to go to KKI.

Alex has a cold too...I know what that means for real!

Welcome to recovery focus instead of adaption focus...move the will get better...hummm..what a concept.

A spinal cord injury is an injury not an illness and injuries recover right? If you break a leg it can take months to heal...well...a spinal cord may take just a weee.... bit longer..

I love you guys!!!!


Anonymous said...

oh yes we are out here, always checking and always praying!
and always waiting to see what God will do next.

Amanda Martin said...

What an encouraging post! I have been "checking in on Dan" daily hoping for a new post and was so uplifted by the post today. Many thoughts and prayers headed your way!

Anonymous said...

Praying for the cold to go away and for all the amazing things about to happen in your life, Dan.
Keep up the post b/c so many of us check this blog all the time. Let us know how the cold is coming along....AND the house..andKKI!! PTL!!!

Anna Bottcher said...

Dear Dan,
This doesn't have much to do with this update, but I just wanted to mention to you that if you haven't already, you really ought to read the book "Heaven" by Randy Alcorn. It is an incredible book and very biblical and I know it would encourage you. Here's a quote from it. The book quoted Joni Eareckson Tada who is paralyzed from her shoulders down: "I haven't been cheated out of being a complete person-I'm just going through a 40-year-delay, and God is with me even through that. Being 'glorified'-I know the meaning of that now. It's the time, after my death here, when I'll be on my feet dancing."

Anyway, I just finished reading it and thought of you and how much you have to look forward to in Heaven because of all you will miss out on here since you can't do a lot of things you want to do anymore.

Also, very cool that those people from KKI want to help you. I will be praying. Hope your day is great. This is the day that the Lord has made! Thinking of you,

Anonymous said...

The best of luck to you, Dan! I'm praying so hard for you. Use it all for God's glory, and you'll be blessed. Although, you are so blessed with a family and friends like yours. You ave no idea how much support you've got. Hope your cold get's better!


Anonymous said...

Me, Connie, again. I, too, highly recommend the book "Heaven" It has made me very excited about going. Almost like a vacation, ya know? With that said, do not give up hope of walking and dancing on this earth. Docs had given up on Rumerfield and now look. You are young and new discoveries are happening everyday. I watched that video and it is amazing. Look at Alex. He was on deaths door with supposed TBI practically and he is brillient!
Just wanted to 2nd Anna's recommendation on the book and to encourage you to NEVER give up hope!!!
In Him,

Jane-Jane said...

Dan this is WAY cool...if there weren't places like this that would push the envelope, there would not be any forward progress to medicine. I'm praying that you get to roll in there in May!!!

Take care of that cold...we have an intestinal bug here this week that just won't leave our home... stinks to be sick!

still praying for you man!
Jane in SC

Beth said...

Thank you so much for keeping all of us out here updated! Dan was my brother Michael's counselor in Mexico when the accident happened. The spiritual growth that happened in Michael's life afterwards was incredible. Just wanted to let you know that we have been checking in on Dan regularly since then!
May you find rest in the Lord's provision and care!
Peace and Joy,

Anonymous said...

Hi Dan,
Just checkin in on you to see how your cold is and if you have a scheduled time for KKI

Amanda Martin said...

Checking in on Dan!

Anonymous said...

Just checking on you all!