JLD has been busy, busy, busy!!

(Kirstin here). This rehab business will keep a guy on the run! Or on the roll, as the case may be.

I know our posts have slowed down, but that is because there is lots to do. I try to sit in on much of it, so I can learn how to be a help rather than a hindrance. Here's a snapshot of J's day:

6:00 Perky nurses rush in to to wake him up and take his blood pressure and bring a few meds. He dozes off again for 20 minutes.
6:30 Equally perky physiatrist breezes in to examine his progress (she's the dynamic doc who oversees his physical rehab program and bust his chops once in a while). He dozes off again.
7:00 "OK, I guess we're not going to get any more sleep, so let's shave/shower/shine." He can mostly dress himself, but since he does most of the routine in the bed, he needs his clothes, toothbrush, razor, etc. brough to him for now. Somewhere midway through the morning routine, his breakfast gets delivered. J is so happy to have grits with his bacon/eggs each morning!
9:00 Recreational therapy (practise on how to do fun lifestyle things in a wheelchair)
9:45 Occupational therapy (practise on the less fun lifestyle things like dressing, bathing, etc.)
10:30 Physical therapy (exercise, exercise, exercise)
11:15-1:00 Lunch comes somewhere in there and J usually tries to relax in the room, hit the restroom, visit with me, talk with nurses, maybe there is a bladder test or something (BTW, the bladder and bowels are singing nicely now! Huge relief on that. Apologies if that is TMI for some of you. J will tell you he has come to appreciate the little things in life, such as basic body functions!)

1:00 More PT
1:45 More Occupational Therapy
2:30 He's done with the structured parts of his day and can chill out, or else take care of other business, start to have visitors, etc. This is also when he hops onto the computer (if its not in use) in the recreational therapy office to post homages to Kirstin :-)

Yesterday, JLD had his first escape from "the joint." We went on an afternoon excursion with the recreational therapist to have lunch downtown at the Mellow Mushroom (a favorite of J's)! Then we toodled around downtown a bit in the 95 degree heat. JLD was sweating like crazy in that brace he has to wear, but kept a good attitude while he wheeled around and navigated the sidewalks, bumpy crosswalks, crowds, etc. I was so proud of how upbeat he was. The outside world is really not built for folks in a chair -- you'd be surprised at the little things that present a big hassle. We visited a few restrooms to see how impossible even the supposed "handicap" stalls can be. Life in a wheelchair means lots of trouble-shooting and creative thinking!! (Plus, good attitude!)

And speaking of life in a wheelchair, no one is saying he'll be spending his life in one. It's still too soon to call. But this next phase of rehab DOES include him being in a wheelchair, and the next goal is to progress beyond it. In fact, the invention of the wheelchair is a fine thing; without it, poor JLD would still be lying in a bed all bummed out and not progressing like he is!

THE PROGRESS
OK, here's what you've really been waiting for...His left leg continues to come along and he is gaining strength as the muscles and nerves remember how they are supposed to work. The right leg is still much behind the other, but there is continued progress in BOTH legs EVERYDAY. This week he used a walker to walk (slowly and carefully, with great concentration) about 100 feet! The PT was in front of him in case his knees buckled (which they did not) and she helped with his hip movement on the right side a bit, but he did most of it on his own. In this exercise, his body is re-learning how to shift/bear weight from leg to leg, to use the hips to take steps, and plant those feet. Over here in the cheering squad, we are MOST THRILLED to see this, as we did not expect to see activity like this so soon, and were afraid to hope for it at all, to be honest. Here on the sidelines, you can't help but get teared up to see this! Or in Aunt Debbie's case, you just up and let them tears flow with joy!!

In addition to this, he has a whole set of specific exercises to get his quads, hamstrings, ankles, hips, etc. to all regain their memory of how they are supposed to work. In the evenings, we often re-do another round of what he did in PT for extra credit. The last few mornings, he has awakened with some stiff, tight muscles.

With the assistance of a PT, he also has begun to roll onto his front side and do some push-ups. Girly style of course, but given the circumstances, let's let that slide, ok? ;-)

JLD GETTING DISCHARGED
The current plan is that Jonathan will be discharged from this rehab center on August 2! We'll likely stay in Greenville for a couple of weeks and do more out-patient physical therapy. We're laying the groundwork to head to San Francisco after that, where he can continue with out-patient therapy for several months. Can't wait to see you West Coasters, too!!

HELP
We need to line up his Bay Area medical team! If you have any Northern California recommendations on spinal cord rehab centers, neurosurgeons, physiatrists, or general practitioners who have experience with spinal cord injury, SEND THEM MY WAY. We have a start on this thanks to Robert and Celeste, but I'm looking for all the info I can get. We need to get J a receiving phsician out there who can help us continue on the long road.

I gotta run now...more later,
Kirstin

This one's for Kirstin...JLD

I wanted to put a post up for Kirstin to thank her for all her efforts. Without her encouragement and help, I wouldn't be near where I am in my recovery. She is a true godsend.

Rehab is slow, but we are seeing progess daily. The phone # to my room is 864 455-7000 (I think the ext is) 7-2915. My room # is 2915.

Tks for the comments on the blog, cards, and other forms of encouragement. We're going to make it thru this!
JLD

Message from Jonathan

Tks to all my friends and family and for the support. I'm in therapy in Geenville, SC my home town. Your suppport means the world to me. This is the hardest challenge I've ever faced. With your help we will get thru this. I haven't felt like calling people, but I will return messages soon, hopefully. I'm concentrating on recovery for now.

Love and thanks,
Jonathan

First Day at Roger C. Peace Center

Hi from Kirstin.

Last night was Jonathan's first night in the physical therapy/rehab center (Roger C. Peace in Greenville). While it was a sleepless night with frustrating nurses coming and going, physical therapy today was great. They took a baseline assessment of Jonathan, and he is doing well. They are thrilled with his strength and have a lot to work with, it seems. He informs everyone at every turn that he wants to do all he can to get his legs back to normal. The physical therapists are happy to have someone so willing and eager, and are themselves willing to go as far as Jonathan can. Today, with the help of 3 physical therapists helping to brace him, he actually stood up on his own feet at the parallel bars and moved his feet forward. This is pretty motivating, and we're pulling for more of the same on his own!! (He has only been out of his bed in a wheelchair about 4 times, so this is a lot of activity for a guy with a crushed vertebra and legs that don't yet work like he wants them to!!) But before he does any walking on his own, there will be weeks and weeks of exercises to help him regain his motor skills. His right leg is still not coming along as well as the left, so while praying for JLD, please put a little extra emphasis on the right side, OK?

I am heading back to the hospital for the night, but wanted to share news of his fire and determination. Thanks for all the prayers, notes and good thoughts! It seems to be paying off so far.

Day 8 in Greenville

Kirstin again...We're awaiting word that the adjacent rehab center (called Roger C. Peace) has kicked someone out of their bed to make room for Jonathan to move in! They've had a waiting list, but it looks promising that he'll move in there today. In the meantime, physical therapists have been making visits to J here in the main wing of the hospital, but once he's in the rehab center there will be a gym to aid the therapy (not quite like the gym he's used to, of course). There will also be recreational therapy and occupational therapy.

In the rehab center he will have a more serious schedule. No more layin' around!! Each day he'll have 2 sesssions of physical therapy and 2 sessions of occupational therapy. He is only allowed visitors after 4:30, so he can focus on his rehab. To help with some mindless entertainment, the fabulous Scott Moore is working on getting a DVD player set up in there. We may have to sneak out with the one in THIS fancy room!! (Just kidding)

He is slowly seeing more and more movement. Each morning when he wakes up his legs and feet are a little more agile. But there is still a long road, and he's especially frustrated this morning. Pray for patience.

Thanks for all your notes and emails, I print the emails and pass them along to him! You can send more to me at kirstinwilliams@gmail.com.

Finally Some Pictures from Lima

Kirstin again, and things are a bit the same today. My family came into town to visit me and Jonathan this weekend, plus some old Greenville friends have stopped in to see him. He's finally relaxing and resting a bit, and has slept a lot more these last few nights.

We went out again in the wheelchair for about an hour. His daily routine includes physical therapy as well as occupational therapy. Physical therapy is concerned with exercising his legs to help them remember how they are supposed to work, while occupational therapy helps him take care of the basic stuff like bathing, brushing, shaving, getting dressed and getting around during this recuperation stage. For instance, during this next stage he'll use a wheelchair to get around of course, and getting into the wheelchair from the bed while his spine is still healing is a major project!! But it feels great to sit up and get outdoors.

EMAIL JONATHAN
I love walking into his room with a stack of notes for him. My email address is:
kirstinwilliams@gmail.com

FINAL MORNING IN LIMA
Once we knew we were on the way home, we were able to document our final moments in Lima. I'll upload more recent pics from Greenville when I can.

Fabiola the Fabulous Peruvian Nurse (with Kirstin and Jonathan in the action hero back brace). She cried when she hugged us goodbye! She took good care of JLD; the nursing staff was so warm and caring.





The Lear jet awaits! I almost cried with relief when the 4 members of the flight crew jumped out and introduced themselves. Later on board, I did cry with relief, and they quickly brought me a tissue and administered chocolate! :-)





There were 2 pilots, a paramedic and a nurse. These guys were awesome. When we stopped for fuel in Fort Lauderdale, they had pre-ordered 3 pizzas to be brought out the plane. I could have kissed them! They had meds and monitors on board for Jonathan. Plus a laptop and DVDs to soothe the frazzled passengers.



On the tarmac before we loaded JLD onto the rocket.
Adios, ambulance guy!






Kirstin musters up her foreign diplomacy skills in the final 2 minutes on the tarmac when she really wants to scream at this airport "handler" for being so disorganized about getting us to the jet.

However, the ambulance driver was not so lucky -- he received the full wrath of Kirstin after getting lost outside the airport and making 4 u-turns before FINALLY pulling out his cell phone to get directions. We were about 2 hours late to meet the flight crew. Why is it a universal and international truth that men do not like to stop and ask directions??!!

(NOTE: You CAN scream and rage in a foreign language and still get your message across. But I only recommend this desperate strategy if you are completely at your wit's end, soon leaving the country, and someone from the US Embassy is calling every 5 minutes to confirm your whereabouts!)

Got Jonny Outside for Fresh Air Today

Kirstin here again...

Today Jonathan got in a wheelchair and got outside for the first time. Believe me, he was thrilled to get out of that hospital bed and wheel out of that room! He was happy just to watch the people and cars go by!!

It looks like Monday he might be able to move to the physical therapy center (Roger C. Peace), but until then some great physical therapists are coming to him to get him going. As you can imagine, he is eager and determined to dive in. The guy is not afraid of a workout! However, in this case, the workout is sitting up in bed and moving into a wheelchair. I keep reminding him, one thing at a time! This will really test his patience.

Please keep the cards and notes coming, he is thrilled to hear from people. The address there is 701 Grove Road, Greenville SC 29605. And of course any email you send to me i print and bring into him. The thicker the stack the better! :-)

I've promised pictures before, but haven't yet had the time to put them up. Sorry about that. Maybe tomorrow. I really want you all to see how great he looks.

More later,
-Kirstin

Successful Surgery Today

Hi, Kirstin again. I'm beat, so will make this short.

Jonathan had a short surgery late today that went great. The surgeon went in from the backside again and pushed the bone fragments down and away from the spinal canal, and the result is that his spinal column is 100% decompressed, we couldn's ask for more. What this means is that there is no longer anything pressing in on the spinal column that can interrupt the messages that are being sent to/from the brain. He also reworked and added to the existing hardware. We will not see IMMEDIATE results from this surgery, but the benefits will show up over time. Weeks and weeks of rehab will tell us more.

And that reminds me...just to set expectations out there...I know everyone wants to hear the doc's definitive answer about whether or not JLD can walk, run, dance at WPS shows again, but the truth is that they really can't say yet. Every spinal cord injury is so different. It will take weeks and months of physical therapy to get things going, and up to 18 months before he is fully recuperated. However, we should have a pretty clear picture of where this is headed within the next 2-3 months.

HOW's JLD?
He came out of surgery feeling little pain, I assure you. It was nice to see him a little doped up and relaxed for a change!! He was comfortable and we all left early so he could sleep. He has a great nurse on duty tonight. Today was a big day, as we're hoping this surgery will make a difference long term. I'll go in early tomorrow to help him shave and wash his hair and freshen up.

NEXT STEPS
Sometime next week, Jonathan will be moved into the rehab center that is adjacent to Greenville Memorial. Dr. Weathers and I did a quick walk through today to scope it out. Here they will begin to put him through the paces! As most of us know, he is fully up to the task. In fact, we were laughing today that we'll have to urge him to slow down and not go so fast.

My parents and sister Nicole are coming out to visit, so we'll see them in the afternoon. Will be great to see them!!

Goodnight, I'm ready for sleep! Tomorrow I hope to upload some pics.
-Kirstin

SMALL Follow-up Surgery on Wednesday

Kirstin here with another update...

The surgeons here in Greenville have decided that the right next step is to do a small surgery to tomorrow to go in and clean up more of the broken bone pieces that may be floating around Jonathan's spinal column. The surgery will be about an hour or so, not a big deal. The expectation is that this will help maxmize nerve recovery and promote increased mobility.

Also, after looking at Jonathan's films, they also said that they thought the surgical team in Lima did a good job. The surgeons here said that the Peruvians did just what they would have done here. This is comforting to hear. We had a generally good impression of the care we got there and had confidence in the surgeons, but who are we to judge? We're just stupid tourists.

COMFY NEW DIGS
He's been moved out of ICU and into a regular room here at Greenville Memorial Hospital (Room #2323). No phone in here yet, but better yet, a DVD player! So we'll be chilling out with movies in the coming days. While the hospital in Lima was new, clean and reasonably modern, it sure is great to be somewhere with ALL the modern medical amenities.

JONATHAN'S CONDITION
He is quite comfy, although he occasionally has pain requiring some medication. He is no longer wearing his "gladiator" torso brace, so he can breathe a little easier. They are already getting him on a physical therapy routine. This hospital has a great rehab center (Roger C. Peace) on the premises and in time he will be admitted there (maybe in a few days). A physical therapist was just here to look him over and work him out. With the brace on, he was able to sit up on the edge of the bed. That might not sound like a big deal, but to a guy who has been horizontal for over a week now, he said it felt great to get the blood flowing. In fact, he needs occasional butt massages to help keep it from falling asleep. His step cousin Scott Moore was lucky enough to be called on massage duty today!! For you eventual visitors who are in the nearby area, there will be plenty of opportunity to take part in this fun! hahahhaha.

For lunch Scott brought in BBQ from J's favorite place here in Greenville. He is currently getting a foot massage with eucalyptis, tea tree and Aveda #12 oil! Ginny Coykendall took me shopping for summer clothes (since I had packed for winter in Peru). And later this week I'll be getting a full massage and maybe a pedicure. So life is good here today, we're glad to be back.

I printed out the notes and pictures you've all sent, thanks so much! Keep them coming, it is so nice to hear from people. In the coming weeks, he will have many moments of needing company and hearing from folks.

We'll be uploading some pictures soon, when we get more time, then you can see for yoursleves how good he looks.

Thanks for your thoughts and prayers while we get those legs back in action!! Pace yourselves, though, we'll need weeks of postive energy.

Ahhh, Home Sweet Home!!

Hi everyone, its Kirstin again! I'm happy to report that I'm updating this blog today in an air conditioned home in South Carolina with a cup of sweet tea at my side! The short story is that we are safe and sound and back in the USA!

We landed in Greenville Sunday night at about 11pm, where an ambulance took Jonathan to the Greenville Memorial Hospital. He is in ICU there and doing great! In fact, I'm suprised they have him in ICU, because he really is in good shape now. He is totally lucid (as he has been all along) and his pain is well managed. He is due to have a cat scan this afternoon (MOnday) and the docs will talk about whether or not this 2nd surgery is really needed -- there's a chance he won't ahve to have it, which would be great. More updates on that as we get them.

JONATHAN'S CONDITION
He is fully alert and content -- and is now of course thrilled to be here. His left leg is getting more and more mobility he can bend it and move it pretty well, but of course no standing on it yet. He is still in bed, and sitting up just a little bit. The right leg is still struggling, but because he can move that foot so well, plus flex his hamstring and calve muscles, the various docs are very optimistic. Injuries like this take a long time to rehab and many people walk away just fine. Just not this week -- that is several weeks off, most likely. But the point is that he is in great shape for a full recovery. Time will tell, and we'll keep you posted.

His mood is great, especially since we were greeted at the airport in Greenville by his family and a couple of friends. It feels great to see familar faces, and that goes for me too! Also, Jonathan is in the hospital where Dr. Weathers, his aunt Debbie and his good friend Dave Coykendall all work! How good can you have it? Its great to go from a hospital where you can barely communicate with the staff to ask for toilet paper, to a hospital with 3 of the closest members of your posse on-site to look out for you!

We even took a few pics of them loading him onto the air ambulance, we figured that someday soon when he's dancing at a Widespread show, those would be good to look back on!

Gotta run, Ginny Coykendall is going to take me shopping for some summer clothes, since I only have things for winter in Peru. I'll have a cell phone a little later today, and you can still send notes to my email for Jonny, kirstinwilliams@ gmail.com. He loves your notes and pictures; keep them coming.

Thanks,
Kirstin

Will Arrive Greenville around 10pm Sunday night

Hi everyone, Kirstin here.

Thanks to Jonathan's aunt Debbie and my bro Steve hanging in there to find the right flight, Jonathan, me and his dad will be flown by air ambulance to Greenville today (Sunday) -- and J couldn´t be happier to be getting back to US soil!!

These services are door-to-door, so a local ambulance is arranged to pick up J at 11am to take him to the airport in Lima. We'll take off on a Lear jet around 12:30 today with a nurse and a paramedic on board. There will be at least one fuel stop, probably in Miami. When we land at the Greenville airport, there will be an ambulance (with drivers that speak English -- yay!) ready to take Jonathan to the Greenville Memorial Hospital. We expect to arrive there around 10pm tonight, or shortly thereafter tonight (Sunday night). There are more variables with the winds and the fuel stop than with a commercial flight, of course, so exact timing is hard to gauge.

He´ll be brought into the emergency room, and there will likely be an MRI done as soon as possible. We don´t yet know when the second surgery will be, but the docs there are of the mindset that it should be as soon as they can get a handle on his condition and get it lined up. Once we were able to make it clear with his surgeon that we were taking him away, the staff here was great about getting copies of the medical chart and giveing me the original films from the emergency room and some post-op pictures.

NEXT STEPS:
The next surgery is a big one. They need to go through his chest cavity to work on his spine from the front. This is much more intense than the initial stabilizing surgery they did here in Lima. Someone says it will take 12-15 hours (???), but don´t quote me, I think Jonathan told me that and remember he's no doctor, plus is on pain killers. (He may have picked that up from his conversations with the various US docs, more details on that surgery later.)

JONATHAN'S CONDITION:
He has much less pain, instead he says it is more 'discomfort'. Although, when he is moved at times htere is more pain. Yessterday they brought in this custom brace that was molded for him, so that helps keep him stable and more comfortable. We told him it makes him look like a gladiator, or an action figure. But I reminded him he'll have to keep the action to a minimum for a while!!

His left leg is very noticibly regaining mobility, but the right leg is not coming around as quickly. He can move that foot, but is so far just able to twitch that leg. It is still early in his recuperation and of course there is an additional surgery, so we hope that this will improve. Please keep your prayers focused on our guy gaining all movement, so he can someday soon be the Action Hero we all know and love! :-)

The sores on his back side have healed up a bit, so that is great news. The nurses have shaved and washed JD's hair so he can feel presentable. Certainly the worst part of this already is the helplessness he must feel. He is not a patient guy and wants so much to be up and about!!

Gotta run, we need to get to the hospital this morning to pack him up.

Thank for all you notes, keep them coming, it really helps!
kirstinwilliams@ gmail. com (remove the space when sending)

Possibly flying JD home this wknd

I am waiting to hear more details, but Jonathan's aunt Debbie has begun to organize a medivac flight home to Greenville, SC! Possibly Saturday or Sunday. I will come to Greenville, too, so I can be around for his next stages of care.

The docs who I have shared the xrays with in the US feel strongly that a second surgery is needed, SOONER rather than LATER, and the surgeons here are of a different philosophy. A little slower to respond and we´re fed up with the wait and see game.

In a nutshell, the surgeons here stabilized Jonathan´s spine from the back, but another surgery to decompress the vertebra through his chest cavity is also imperative for him to regain as much mobility as possible. I´m sure there are better and more thorough medical explanations for all this, but this is the best I can offer you at this time. We are still unsure of how much mobility will return, and are bracing ourselves for any outcome.

OTHER DETAILS:
- His mood is pretty good considering the circumstances. We had a new realization today of how serious this is and he was a bit emotional. He knows his life has changed. He loves the notes and pictures some of you have sent. Send more! kirstinwilliams@ gmail.com (remove the space)
- He is now in a regular hospital room, but no phone yet. That might take longer to get than the 2nd surgery, so don´t hold your breath.
- J's pain level is very manageable now, about a 3 on a scale of 1-10.
- He can still move both feet. He is gaining some mobility in his left leg, but his right is NOT yet coming along as well. By mobility, I mean he can twitch it, or straighten it when I hold it up for him. We´re not talking about a lot of mobility yet at all!
- A physical therapist visited twice yesterday to move his body around and stretch him, but when i left the hospital at 4pm, he had now yet shown up today. Physical therapy early on is important, so we are eager to see lots more of that!!!
- They have him on an inflateing/deflating mattress pad, which helps to minimize the backside ulcers (ok, bed sores) that we want to avoid at all costs.
- He is eating solid food in moderation.
- He is able to urinate on his own (through a tube), which is good news.
Apparently it takes a few days for some of these body functions to return but they are important signs.

Sorry for all these gory details, but I know some of you medical types live for it, and i hate to disappoint you.

Running back to the hospital. Gotta have dinner and see if the guy who sold me the titanium parts for JLD is still there visiting him and flirting with our friend Heather. I wonder if all titanium customers get such good follow-up sales calls. Or if it helps to have a charming, evervescent and fluent gringa by your side?

(By the way, if you think you´ll be hospitalized in a Spanish speaking country, you should travel with Heather!! She majored in Spanish and is translating everything for me. She has been a gift!!!! I do not know that I would have done without her here! Besides break down and cry a whole lot more.)

Spinal chord surgery for Jonathan!

Hi Everyone, this is Kirstin and I have commandeered Jonathan's blog for now!

As some of you have begun to hear, Jonathan was in an accident on Monday afternoon. He fractured one of his vertebra (lumbar 1, for you medical types). He was paragliding and during his 3rd solo flight he landed really hard on his feet and the vertabra was compressed. He had a five hour surgery that wrapped up on Tuesday morning to decompress the vertebra. Three neurosurgeons inserted titanium rods and screws into his spine to stabalize it. He is in a a very new and clean hospital with very professional medical staff. The surgeons seem very accomplished and i have so far been impressed.

CURRENT STATUS
Jonathanhas been in ICU for 2 days, but today (Thursday July 6) they expect to move him to a regular hospital room with a phone. When he is all up and running in the new room, I am sure he would love to hear from you all and I can forward his phone info. He is very lucid and present. His pain is under control (a 4 on a scale of 1-10, a vast improvement over the first afternoon before surgery when he was in AGONY.) He has very limited movement in his legs as of now, but that he can wiggle his feet and twitch his legs is a very positive sign this early on, which hte docs are pleased about. In time, the doctors will know more and be better able to make predictions about the return of his mobility.

NEXT STEPS
An MRI to take another look. A possible second surgey to furhter stabilize his spine. I hope to learn more about that in the ocming days. Whether he will fly home for this second surgery or have it here is still unknown. I have a neurosurgeon friend in the US on stand by to look at scans of J's xrays, which will help. Plus, the good Dr. Weathers is up to speed on the situation. Both are likely to speak iwth J's surgeon(s) soon. I feel lucky to have so much medical support in the wings there in the US.

HOW YOU CAN HELP
There will be weeks and months of opportunity to lend support, but here are some immediate ways you can show your support for Jonathan...
1) Keep J in your thoughts and prayers. It will comfort him to know you are praying for his full recovery.
2) Send greetings and 'get well cards' to my email address that i can print and bring to him in the hospital. Also send news of yourselves and jokes. He needs other things to think about besides his spinal chord injury. kirstinwilliams@ gmail.com
3) Send me pictures of yourselves, so that I can also print these and surround his hospital bed with the faces of the people he cares about. Familar faces and voices are very healing.

HOW YOU CAN REACH ME
kirstinwilliams@ gmail.com (remove the space in this address when sending)
I have a cell phone now but need to reserve it for some immediate emergency phone calls, so best to email me for now.

That's it for now. I will try to update this to help keep you all posted.

Thanks in advance for your support.