6.30.08

Steve had a good day today. He played 21 with Nana, which kept him amused--Nana has always been a good one with the games. He was in his chair for about seven hours. Karen kept an eye on Steve for a while so that MaryAnn was able to get some rest in the room, she's pretty fatigued.

I got an email today from Jim Singlyn who swam 12.5 mile around Key West in order to raise money for Steven! He swam in over 90 degree heat and despite a battle with dehydration towards the end, he completed the race. AMAZING. Thank you so much Jim and Dale (a friend of Uncle Joe's), for thinking of Steve with this event.

Weekend Update

Overall, Steve had a solid weekend. He felt good and had plenty of company to keep him smiling. Yesterday, Kris and April were there and Nana and Aunt Karen arrived from New York. They all got to hang out with Steve in the atrium near one of the main entrances to the Shepherd Center. Now that Steve and Mare have clearance to travel without a nurse, they can cover new ground. Oh and since T-shirts are back in his repertoire (they have been for a little while now actually), he rocked his Goonies shirt today. He was a little cold in the afternoon, so they layered him up with cozy blankets. And April stayed with him last night.

Today, Kris left early so that he could give Joe a hand at the house, but Jeremy and Melissa came, which was great. They got to hang out in the family room on this sixth floor of the other building at the center. Steve's been spending about seven to eight hours in his chair, and more and more of that time is being spent out of his room, which is tremendous progress. He was a little cold this afternoon and sleepy this evening.

Things are moving along at the house. I think that they got all the framing done, and they were running the wiring today. Kris got Steve a television for while he's in bed, and it will be hooked up to the computer so he could be online through it, checking out a DVD, or simply watching CSI. Things are really coming together....

6.27.08

Steve feels okay right now, he's back in bed resting. MaryAnn just held the phone up to him so that I could tell him about the arts and crafts that I have planned for Sadie tomorrow and the yard work we have scheduled for the morning. He told me good luck with Sadie's first scissors and glue activity.

Steve's chest is sore from a terrifying episode this morning. His airway was blocked and he was non-responsive when his nurse got to his room. He was out for a little while and when he woke, there were lots of people around him, some performing chest compressions on him. They are going to increase his respitory treatments over the weekend to try and keep his lungs clear. Hopefully with time, this will get better because these episodes are terrifying.

A message from MaryAnn and Joe

Steve,

Everyone is working hard on the house to get you home as soon as possible! ALL OF YOUR FAMILY,FRIENDS AND NEIGHBORS HAVE BEEN FANTASTIC!!! Adrian is working me hard,but he gives me a little break every now and then.(Boss, Ben and Steve turned out to be one heck of a sheetrock ceiling wrecking crew!)Steve Willet is proudly driving the wagon and the grand kids love the third seat! Kris and Adrian did one heck of a job laying cement block the other night, I don't think Kris is ready to quit his day job just yet!Chris came by with Stanley this morning and has lumber coming tomorrow and is framing over the weekend!JP & Johnny are ready to come in right behind them.Joe(Did a fantastic job roughing in the plumbing,just like pop.I also no longer take baths in the hot tub thanks to Joe. )and Wes will be in after the sheetrock. Everyone has been asking how they can help and I greatly appreciate that! Once we are ready to paint, and clean up I will let everyone know. Thanks to all that have helped and all that are offering help!!!! This has been a monumental task and we could not do this without the great
support of everyone, Steveo I think we are going to have to have FISH give a shout out to everyone when you get home!!!!
STEVE WE ARE PROUD OF YOU KEEP UP THE GREAT WORK!!!
Thanks everyone for all of your help, generosity, fundraising and donations!!

Steves Dad Joe and Mom MaryAnn

Aquarium visit

Steve went to the aquarium today! It was a cool outing and he felt good the whole visit. They departed at 9 AM, and were back at Shepherd by noon. It would have been better if they had a little more time, but it was still great to be surrounded by fish. Steve was a pro maneuvering the wheelchair through the dark rooms, no surprise there.
By the time they got back, he was so exhausted that he slept through occupational and physical therapy sessions. He didn't even know that they were there. I am so thrilled that he had a solid excursion out!

It looks like he just needed some solid rest yesterday, he ended up sleeping for five hours in the afternoon/evening.

Nana (Joe's mom) and Aunt Karen (Joe's sister) come this Saturday and will stay in Atlanta until Steven goes home. Wonderful.

6.25.08

Steve's not feeling well today. When I spoke with MaryAnn about an hour ago, he was back in bed. She said that the first thing that Steve said to her when she arrived was, "Call respitory, I can't breathe." He had a lot of secretions in his lungs. He was sleeping when we talked and MaryAnn was trying to use the time to do some research on his respitory equipment for home.

MaryAnn and Joe are dealing with the massive stress of Steven needing to leave Shepherd and the house not being ready. Insurance won't allow him to stay at the Center any longer, and they haven't been able to start framing the house. And of course, when they get home, they need to have all of the equipment in place. It's more stress than any of us can imagine. We're hoping for a miracle that everything will pull together in time.

As for Steve, I'm thrilled to report that he had big, big smiles yesterday when three of his friends from home--Stults, Dirty and Bubby--surprised him while he was in the gym. His occupational therapist spoke to his physical therapist about him having a little more time with his friends, so he actually got permission to "cut" physical therapy. Stults said this made it just like old times (of course, this just meant that Steve would do the exercises later with MaryAnn, so he wouldn't miss being active for the day). I know that I ribbed Stults about not showing over the weekend, so props for making good. Thanks to all of you guys for bringing the unexpected and much needed smiles. Awesome, awesome.

Hopefully, as I write this, Steve is feeling better. Let's pool our collective energy and pull for this to be true!

Friends photo and Reeve's excerpt

Today, this one's for Steve.

Steve,

I met Jackie in junior high, but we became friends in high school when we shared the same lunch period and would go to her house and raid the sugar cabinet. You'd be proud of the assortment of cookies, and we'd put away sleeve after sleeve of Thin Mints. Anyway, all these years later, Jackie is the friend who sent the holy water, blessed by the Pope, with me to Altanta. She's the one who sent me with the CD written and recorded by her friend who lived through a devastating car accident on Long Island. She's the one who is working to see if she can get any of the medical supplies that you will need at home, through her job. Jackie, who I can still remember in my limo on prom night with equally big, teased, 80s Strong Island hair, the kind of hair that casts dark shadows in the sunlight. She also sent to me two copies of the Paralysis Resource Guide, available through the Christopher and Dana Reeve Foundation's Paralysis Resource Center. Isn't it amazing when people in your life, who you've known forever, end up lifting you up in way you never imagined? Kind of like this gang who rallied to come to see you. Good peeps.

Anyway, your mom and April both have copies of this book (they send you two copies out for free), so you have access to this same info. This book is chock full of details on spinal cord injury, so let your mom know if you want for her to breakdown anything ranging from spasms to stem cell research. There are also a TON of resources in here for once your home and ready to get on the computer.

The other day I stumbled upon a page I'd like to share with you. It's an excerpt from a speech Christopher Reeve gave at the Omega Institute's Living a Fearless Life conference in 2004.

Basically, I wish I could be there with you. But ever the bookworm, I'll send these words in my place. Here's my virtual hug:


I live a fearless life on a daily basis. I’m reminded of that every time I come into New York, because I’m put in the back of a van, strapped down by four straps, and driven around by a bunch of guys who just happen to be firefighters from Yonkers. These guys are used to driving fire trucks--at great speed--so when I get into the van, I have to give it up. As a self-confessed control freak from way back in my early childhood, being able to sit in the back, assume that we’re going to safely reach our destination, and actually doze off has been big for me.

This one hour van trip is a good metaphor for the journey I’d like to talk about. For so many of us, the source of our fear is the loss of control. But the more we try to control what happens to us, the greater our fear that we’re no longer empowered, that there’s no safety net, and that dangerous, unexpected things may happen. Ironically, the act of trying to control what happens is what actually robs us of great experiences and diminishes us.

The lesson I had to learn when I had my injury was pretty drastic because my life before that as an actor had been one of self-sufficiency, perseverance, and discipline. I had been extremely self-sufficient from the time I finished high school, all the way through college and graduate school, and as I made my way to Off-Broadway, Broadway, television and film. I had done well and was used to being in charge.

My accident was a strange and very close call. If I had landed differently, even by a millimeter in one direction, I wouldn’t have been injured; if I had landed a millimeter the other way, I wouldn’t be here today. I had, at best, a 40 percent chance of surviving my surgery. Also during the surgery I nearly died as a result of a drug reaction. I was told I would never again move below my shoulders, that I would absolutely have no further recovery.

I dealt with it with my wife Dana at my side, thank God. We just decided not to buy into the fear that people tried to instill in us. This decision was the most important of all. How many people are walking around today three years after they were told that they only had six months to live? How many of us are doing things now that we were told that we could never do? It happens all the time. In 1995, when I was injured, scientists didn’t yet understand how to regenerate the spinal cord. Recovery in this field was still a mystery. Dana and I figured that if doctors didn’t know what could be done, we were not going to accept their absolutes. We figured we should look at the glass as being half full and simply try to go forward. Were we happy about it? No. Did we feel uplifted by this challenge? Absolutely not. Not at all--not for one second.

But I’ve learned that it doesn’t matter. In fact, one of the keys to going ahead and conquering fear is to ignore your moods. Ignore it when you feel like you really don’t want to do whatever it is today. Ignore it when you feel like you can’t be bothered. Often you start the day feeling bad--feeling like you don’t want to do something or you are treading water and getting nowhere or you can’t keep going--and the day turns out to be one of the best you’re ever going to have. You have to leave yourself open to possibility. By staying in the moment regardless of how you actually feel, you leave yourself open for surprises, both on a big scale and on a little scale. That was my first lesson. We decided that I would go to a rehab center and make the absolute best of it. Why? Because everyone was saying nothing would happen, and I don’t take kindly to that.

In those days, doctors didn’t really believe in physical exercise for people with high level injuries like mine. I decided that I was going to demand to exercise. This meant electrical stimulation of the muscles so that I wouldn’t lose muscle mass. It meant being put on a special bicycle with electrodes so that my legs could get better circulation and I could get a cardiovascular workout. It meant going into a swimming pool, which allowed me to regain movement.

First, I had been told I wouldn’t get any recovery at all. Then they said I might recover a little within six months to a year from the time of my injury. After that, I could forget about it. The year passed, and I decided to keep exercising just for my own sanity, for my own peace of mind. I wanted to embrace rather than fear my situation, even though I hated it. Sometimes you have to embrace things you hate. So, I exercised very hard. Five years after my injury, I suddenly found I could move one finger on my left hand, my left index finger. A couple of scientists saw that and flipped out. They made me the subject of a study at Washington University in St. Louis. Between 2000 and 2002, I ramped up the exercise, and guess what happened? The movement in my finger spread. Suddenly, I was able to put my foot on someone’s shoulder, bend my knee, and push my legs. I was able to use my biceps and open my arms all the way, moving them back and forth.

The results of this study were published in December of 2002 in Science magazine and in the Journal of Neurosurgery. That was a victory for me. More importantly, it proved a theory held by Dr. John McDonald of Washington University that if you get someone with a spinal cord injury moving and exercising as soon as possible, it will help recovery. Energy and memory are actually stored in the spinal cord, and so remaining neural connections can be developed and used. Washington University now has a center for spinal cord injury where, at the moment, 300 patients are recovering by doing the same things I did.

I also tried alternative medicine because I had letters and inquiries from all kinds of healers. I’m sorry to say a number of them were way out there, but I did find out that our minds and our spirits have a tremendous ability to affect the body. On the downside, we can make ourselves sick. On the upside, we can definitely affect the healing process. I discovered this during the summer of 1997, when I had an infection on my left ankle that went all the way down to the bone. I was told that if it went septic and contaminated the bone once again it could be the end of me. The doctors tried an antibiotic but I was allergic to it so I had to stop taking it. That summer I decided to spend eight weeks sitting on the porch of my house, looking at the mountains, and reflecting on the fact that everything in nature wants to be whole--from the micro-organisms of our bodies to our nation and even the planet. I envisioned my ankle the way it used to be and envisioned that it wanted to be whole. Over those eight weeks, it healed. Now you wouldn’t even know there had been a scar there. And anybody can do it. I am not skilled and I have not studied these things, but I’ve experienced them and anybody can do it.

I am proud of what I have achieved, but my path hasn’t been without problems and difficulties. You have probably heard about my successes through the media, but you don’t really know about the setbacks and the difficulties. About a year ago, I was the second patient in the world to have diaphragm pacing implanted into my body. It’s like a cardiac pacemaker, but it stimulates the diaphragm to create normal breathing and replace the ventilator. I felt that it was safe and that there was a good chance it would work. It didn’t. It failed.

And yet I’m telling you this because it is important to know that living a fearless life means that you might go through an experience that doesn’t actually work out for you. The way to stay positive, to avoid being bitter or feeling like a failure, is to look at the fact it might help somebody else. For example, this failure of the diaphragm pacing has led to modifications in how doctors perform the procedure, and the set of patients who followed me have all gotten off the ventilator.

You might wonder why I went in so early on some of these experiments. I’d been pushing neuroscientists to be fearless, to not get hung up in the laboratory doing experiments forever. So, I felt that if I was pushing scientists to be fearless on the biological level, I had to do the most I could on the rehab level.

The biggest problem in science right now is that researchers are afraid because they don’t want to fail. Why? Because if they fail, they might not get a grant, and their livelihood is at stake. So they say, Okay, another experiment. They say, Let’s try this again, and try it again. Meanwhile, there are hundreds of thousands of people with spinal cord injuries and millions of others with diseases and disabilities who are waiting until scientists and doctors get over their fear.

The system is built on fear and that is what stops some of the most courageous people from moving forward. Think about what would have happened to the Wright Brothers if there had been a flight safety commission when they were working on their models. Do you know how many times the Wright Brothers crashed? They wiped out on a weekly basis. It was almost embarrassing, and I’m surprised they didn’t kill themselves. But they didn’t; they dusted themselves off and said, All right, there is something we’re not getting quite right about this plane. They built another plane model and another and another until, finally, a couple of bicycle shop owners from Dayton, Ohio, using their own money, flew.

There are also going to be times in life when living fearlessly is very simple. One of the first things that happened after surviving my surgery was that I lost my finesse. My social skills went down the drain. I realized that social skills are, to a large extent, mini-lies. Now when someone asks me a question, I have learned to tell the truth because, really, what the hell do I have to lose? My father, who was a writer for his entire life, said to me at one point, “Why don’t we work on writing your life story and write it together?” Before my injury, I would have said, “Uh, that’s interesting. Let me think about that.” Instead I said, “Never in a million years. There is no way I could write the truth about my childhood.”

Of course, the greater difficulty lies in being fearless in surrendering and in giving. I don’t want to sound too noble, but I really have been able to say, All right, I’ve had some setbacks, but look at the other people who have benefited. I recommend you do the same thing because being fearless is not always going to get you exactly where you expect to go. It might take you in a completely different direction. It might not give you what you want, but it can satisfy you to know you did something for the world, for the planet, or even just for your family or your neighbors. And that’s enough.

There are lots of ways of being fearless. I highly recommend it. To a large extent, the key to fearlessness is the “no matter what.” Keep that in mind. It’s truly amazing what we can do by allowing the spirit and mind to flourish. Our capabilities go way beyond our understanding. Trust in that and go forward. Get past the clutter, the noise inside you that says, “I can’t, I can’t, I’m not good enough, I don’t feel like it, I’m sick, I don’t want to.” That is just like static on a radio. Just clear the channel, find good reception, and you’ll be amazed by what you can do.

6.22.08

Yesterday marked three months since the accident. Three months seems like an eternity I know, but remember that in the scope of spinal cord recovery, it's still early. Steve, on behalf of your family of hope here, I want to remind you that you are in the hearts and minds and prayers of everyone here as much today as on every other day of your recovery. Again, we're not going anywhere. We believe in you and we know you believe in you. Keep practicing those neck and swallowing exercises! As Lorenzo says, keep focusing on moving one thing. You never know when your day is going to come. Be patient and keep believing. We love you.

As for Steve's day yesterday, Kris and Ashley were able to stay until the late afternoon. Steve felt pretty good for most of the day, although by evening, his face felt very, very warm. They say that with time, these temperature extremes will level off some. That day can't come soon enough considering how uncomfortable it makes Steve.

April left at 6 PM, but was back 20 minutes later saying she just couldn't leave Steve. Thanks Paula for looking after Kylie so that April could stay another night. And April, thank you. Simply and massively, thank you.

I have to check in with Joe on the homestead, I know that things were slowed because of a termite issue. I assume that things are back on track now that the exterminator was there. Wishing you a productive and issue-free week Joe and crew!

6.21.08 PM

What a day! Steve had company from Blake, Jennie, Brandi (thanks for driving!), Nikki, Beth, Ashley and Justin--all pals from Huntsville. Oh wait, where was Stults? Yeah, whatever dude.

Kris and Ashley arrived today, as did April, so like I said, a full house! Lex came by to entertain for a bit. He made everyone laugh, cause ya know, that's what he does. Steve felt good. Wonderful.

The group visit took place on the 6th floor family visitation room. Steve must be a master at the chair now because that is not a small trip from his room.

It's wonderful to know that Steve is surrounded by so many friends and family. I know this is such powerful medicine. April will be staying the night so I think we can assume that he'll sleep soundly having her there with him.

6.21.08

Steve and Mare made their way alone (a very big deal) up to the ICU yesterday so that Steve could visit his old nurses. They had been hounding him to come see them, so they were all psyched to see him.

Sharon, MaryAnn's friend from Minnesota, arrived for a visit last night. For those of you who don't know, Sharon is mom to Steve and Jeff (twins) and Lisa. Kris and Steve grew up with these guys on Long Island and they've stayed tight since. Anyway, Sharon got some laughs out of Steve and had one of her boys on the phone with Steve too.

And as you know, Steve had a big day today with a visit from six Huntsville friends. Also, Kris was coming to, and April, so a busy weekend indeed. I am supposed to talk to MaryAnn this afternoon so I will be able to give you an update later.

6.19.08

Steve went outside today. Katie, his physical therapist took him onto the grass so that he could get some experience on different terrain. His buddy Lorenzo stopped by. Lorenzo has this soothing voice and he's so inspirational--it's great that he visits Steve with regularity. He was at Shepherd years ago, but now he does out-patient therapy. He tells Steve to focus on moving just one thing, like a finger, and putting all of his energy towards that goal. Lex couldn't come by today, but he called to see how Steve was doing. He keeps and steady eye on Steve and Mare.

Steve was in his chair by 8:30 today. That's a pretty early day for him. And he was just getting back into bed--so a full day indeed. Overall, this week had been a series of highs and lows.

Click Here for Article on Lex (with Steve photo)

Did you guys see that link? Did I JUST FIGURED OUT HOW TO DO THAT?! That is a link to an article that ran in the Atlanta paper about Lex, and it includes a photo of Steve and Lex and a quote from MaryAnn. I appreciate your patience while I learn how to add links. It's a little tricky.

Sorry to be so late in posting tonight, I was at a funeral for a beloved cousin today. Despite the immense sadness, there was a lot of love expressed and conversations had about Steven. A few of us talked about some big fundraising ideas on the horizon. And there was also mention of having the entire family sport Steve-O shirts at the annual reunion this year (you ready for us Courtney?)

Steve did not have the best of days. His sweating started pretty early today, around 1. He had group activity, which was painting. MaryAnn told his occupational therapist that Steve doesn't really like painting, unless it's with spray paint. They rigged a brush to a head piece which allowed him to paint. It's important for him to explore activities which he can participate in. While I don't think that painting will be Steve's new gig, he's trying. His willingness to be open to things is hugely commendable and important. He's maintaining an open mind. And being positive. May we all take a lesson from that, huh? Besides, he's so sweet, that even if he really didn't want to do it (which may have been possible today) when his occupational therapist Pat suggested it optimistically, I bet he didn't want to let her down, so he said okay. Gotta love him.

I hope Steve has a better day tomorrow. MaryAnn has been having some intense training on administering Steve's medications. Let's send them both our love, and prayers for perseverance and strength with all of the new and unexpected things that they both are encountering.

6.17.08

Steve did a mile on the bike yesterday. The way that this particular bike works is that it is powered automatically but it doesn't have the electrodes, so it's basically designed to move Steve's legs which help with spasms. A mile! MaryAnn said that he looks really good (no doubt in anticipation of his friends' upcoming visit this weekend).

MaryAnn is adjusting to the portable vent that they have switched Steve to in anticipation of his return home. I have to say, MaryAnn, who hated hospitals before all of this, has become quite the impressive pro in her mastery of Steve's medical needs. She's always been my amazing big sister, but in essentially becoming Steve's nurse, she's been absolutely incredible--it's beyond words. BEYOND WORDS.

And Steve's had a good stretch lately, which we are so thankful for. I know that the company this weekend will be great for his spirits too. Thanks everyone!

6.16.08

Steve had OT this morning. They focused on his neck exercises. This afternoon at 2 he has physical therapy. He fell asleep at about 5:30 last night and he was out. He slept well the rest of the night.

Once again MaryAnn, Joe, Kris and Steve want to express how thankful and touched they are by all the efforts that went into Saturday's event. When Mare just told Steve that I was about to do a blog update and was there anything he wanted to add, he said, "Thank everyone."

6.15.08

Great photos from yesterday's benefit, huh? Thanks again to every single person who helped, attended, organized and donated. Here are some more great images from Jennie (link below).

http://targetphoto.kodakgallery.com/I.jsp?c=8tlpgf8.7p7zald4&x=0&y=-3lh1hk&localeid=en_US

Also, Courtney had so many people asking her about the shirts, that she is going to place another order for Steve O T-shirts. The rough deadline is June 30. If you'd like a shirt, you can contact her at 256-828-9325, 256-755-7585 or cjlburrough20@gmail.com. Thanks Courtney!

Steve slept soundly last night. When I just spoke with Mare, she said that they were just heading back to the room with Steve. I think they were going to the 6th floor family room in the other building. That's definitely the farthest excursion that Steven has had within Shepherd. MaryAnn is now signed off on the vent which means she can take him out of his room without a nurse, provided that she has someone to assist her. And she had April on hand, so they were free to roam. April also stayed with Steve last night. Awesome.

And Happy Father's Day Joe! Thinking of you! I hope you had a good drive back to the house.

6.14.08

Steve had a good day yesterday. In the morning, he had one last visit from Courtney, Jim and Bubby. Word on the street is that Bubby did a little jig, which earned a Steve-O smile. Sorry to out you Bubby, but good work.

This morning Steve had another scary episode when his trach became clogged again and he wasn't getting enough oxygen. These are truly terrifying moments. And this is why it will be necessary for someone to be close to Steve 24 hours a day once he's home.

Lex was in and showed Steve and the crew a video of a wrestling match where he was wearing hot pink pants. Ah, the 80s. Ah spandex. I'm sure that made Steve smile too.

So to recap, if you want to make Steve smile, do a jig or wear fuschia tights. And if you do both, well then it would be clear that you really, REALLY love Steve.

As for the benefit in Huntsville, Kris said that it is a sea of green Steve-O shirts. A phenomenal turnout, over 50 cars including two fire trucks and my fathers old, much-beloved 1989 Caprice Classic wagon (which my dad gave to Steve, pretty much as a toy. who knew it would become legendary), two bouncy houses, a Coca-Cola refreshment trailer, etc. etc. The yard sale alone raised $1,900 so far! (Thanks Jennie!)

Massive worldwide hugs and thanks from MaryAnn, Joe, Kris and Steve to Jeremy and Jason for putting this car show together. I know they are feeling the love. Kris is going to email me some photos later and I will include them on my next post. Oh, and thank you to every single person who attended the event today. I am moved to tears by the generosity and I'm so grateful that Steven is the recipient of so much love and goodwill.

6.12.08

Steve had a solid day. He started off by taking his first shower. I can't imagine how good having his head under running water must have felt. Later in the day he had a visit from Courtney, Jim and Bubby. Old friends make even a good day better.(Steve used to work with Jim operating backhoes, and then worked for a time with Jim's dad who is a plumber. Bubby was going to be Steve's roommate once Steve closed on his first house. This was due to happen four days after the accident. Courtney, Jim's wife, is the friend/mastmind behind the Steve O T-shirts.)

This afternoon Steve used the electrode bike and rode it for 13 minutes. Since he is on the respirator, he can't breathe faster during physical activities, so you have to keep a close eye on his oxygen levels. From what I've read, Christopher Reeve's doctors credit some of his regained function and sensation from workouts which include using a bike like this one.

Assistive Technology was in and said that they need to wait for Steve's eyes to heal more before he'd be able to use the eye recognition software. So they gave MaryAnn and Joe some contacts in Alabama who should be able to set Steve up with the right software.

Did I mention that Joe is back? Yeah, he got back to Atlanta late last night.

6.11.08

Steve had a fever last night of 101.6 when Mare left. But he slept all night and was still asleep after 9 this morning. Right now he's doing pretty well. Kris left a little earlier today. I know it's always tough for Steve when Kris leaves....

And so, let's talk about this Atlanta roadtrip we're pulling together. Jennie B is kind enough to organize, so if you are interested in joining the crew, please email her (jbfitness13@mchsi.com) with a few dates that work for you. We've been talking about June 21 as a tentative date, so please indicate if that works for you. Once we have a firm head count, we will figure out the kind of vehicle we're going to rent. Woo hoo! This is awesome. Thanks to all of you who are so eager to join the smile brigade across state lines.

Speaking of lines, back at the house in AL, unfortunately, the main water pipe to the house was cut, so last night, Joe was bathing in the hot tub. I'm sure Skip (their black lab) was quite amused.

Nikki, Steve did get your poster and card and wanted to tell you but MaryAnn doesn't have your email. So thank you!!!

6.10.08

Steve had a fever last night and this morning--102. He was taken off of an antibiotic that the infectious disease doctor wanted for him to remain on, so now he is getting it again. Hopefully that will nip this fever. His temp is currently 100, and he's in bed for today. He'll have to give that bike a whirl tomorrow.

So Steve's leave date from Shepherd Center has indeed been moved to July 2. He said that this is good since it will give the house crew more time to get it all done (Thanks guys).

I have to say that I am thrilled by the enthusiastic response to the van offer. The date is flexible, whenever is best for you guys. I am wondering if someone there could be the point person. Jennie, I think I have your email, would it be ok with you if we were to coordinate? You could round up the crew on your end, and I could communicate with Uncle Joe about logistics so that we can make sure everything is covered. Cool?

The Atlanta newspaper is doing a story on Lex Luger, and took a photo of Steve with Lex today. Gotta love the Lex. He always makes Steve smile. He's a riot. I assume the paper will be available online, so if you remember, check that out this weekend.

Finally, I want to remind everyone about the Steve Collins benefit event in Huntsville this weekend. (This includes the yard sale right? if so, it's clear that a boy made this flyer. A girl would never leave off the yard sale!) I couldn't post the flyer, so here is a link to it. Massive hugs and thanks to EVERYONE who had a hand in this.

http://flipbit.com/collins/SteveFlyer.pdf

And of course, thank you to Jimmy who posted a comment and everyone else who is raising money for Steve with the Swim Around Key West on June 22. That's a 12.5 mile swim! If you'd like to make a contribution to Jim's swim, his email is jsingelyn@gmail.com.

http://www.fkccswimaroundkeywest.com/

I am overusing the phrase Thank you in this post, I know. So I will say that I deeply appreciate the response to my request for posts. Muchos gracias my friend.

6.9.08

A bit later than expected, but I'm glad to report that Steve was more comfortable today than he has been over the past few days. Kris is staying with him again tonight. Tomorrow during PT, Steve's going to get on the bike that will put electrodes onto his muscles. He is really excited about that.

Tomorrow will mark 79 days that Steven has been living in a hospital room. 24 hours a day--you can just imagine the boredom. Everyone has been so good about providing positive messages or just admitting how boring things are on their end, and once more, I am going to ask for you to share your tales. Seriously, I want big numbers on the Comments. Steve needs you. I know that he and MaryAnn are running out of topics to cover.

And since we are not sure how firm the June 18th release date is, Steve is likely going to need some company too. My brother (Uncle Joe) wants to rent a van for a bunch of friends to drive to Atlanta together. (Of course, van and gas paid for). Uh, road trip to see one of the most awesome friends you know? Hello. I'd take him up on it fo' sure. So bear that in mind.

6.9.08

Steve slept well last night. He no longer had a fever as of this morning and when I talked to MaryAnn at about 9:40, they were about to get Steve into his chair for the day. He usually has PT at 10 followed by OT--so I may not have another update until around noon when he has a break in his schedule.

6.8.08

To Bill Miller, I know you don't want attention focused on you here on Steve's blog, but I just want to say thank you (and thank you Carol too). And I know that Steve would want to thank you also. Your thorough and thoughtful comment came at the perfect time, offering meaningful encouragement and inspiration. I know that MaryAnn read your comment to Steve yesterday and he was very interested. He wasn't feeling well so she is going to read it to him again today. And Joe, Steve's dad, has your contact info and is going to be reaching out to you. (BTW, to answer your question, the doctor said that Steve's airway was healing fine, no complications there.)

Unfortunately, Steve was in bed all day yesterday, he had a fever of 101 and he said that he had leg pains. He got to see Kylie briefly. Kylie was shy, which is not uncommon for her, but she did yell "I love you" to him from the doorway.

Steve had another scary episode on Friday night, his trach became clogged when the techs where turning him.The rushed the crash cart down to revive him. MaryAnn was informed by another patient that this was the second time that Steve was without air long enough to require these measures. No wonder why he sleeps better when someone stays with him at night.

April left yesterday, but Kris is coming today and will stay with Steve overnight. When I spoke with MaryAnn at 9:30 today, she said that Steve was still sleeping. We hope that he is going to feel good enough to get into the chair today.

As for the homefront, building will start on the house tomorrow. Joe asked for me to note that I may send out a request for "All Hands on Deck" for anyone willing and able to help move the construction along.

And Joe sent an email out to his contacts within government agencies, trying to find software that will help Steve communicate better. Among the many helpful responses that Joe received was an email from Steven Hawking's office. Talk about calling in the big guns! Pretty cool huh?

Let's all pray for a better day for Steve. Thank you everyone. I am continually moved by your loyalty and love.

6.6.08

Steve had another outing today, this time to the new Adam Sandler movie. Unfortunately the whole experience revealed the massive physical and emotional challenges of Steven's current condition out in the world.

His lungs needed to be suctioned three times, and now this intense exercise had to be done in a movie theater/mall setting. His hands were cold, but his head felt like he was on fire, making him sweaty and uncomfortable. And some people stared as he maneuvered his chair. The toll of this new life is overwhelming. So what started as an exciting venture ended up just making Steve deeply sad and upset.

Tomorrow, Steve will see Kyle (April's 3 1/2 year old daughter) for the first time since the accident. Steve has been a huge part of Kylie's life for the two years that Steve and April have been dating. Kyle has been dying to see Steve; she misses him very much. I pray that the day will be full of smiles. I pray that tomorrow is the day that it starts to get easier. And I take comfort in knowing that April is staying with Steve tonight. I know that means that at the very least, Steve will start his day with a big smile. Thank you April.

6.5.08

The results of the test yesterday showed that when Steve swallows, liquids are still going down his airway instead of his esophagus. So yesterday wasn't Steven's day. But maybe tomorrow will be. Or maybe one day next month. It's still early. This long process requires all the patience and hope in the world.

Thank you to everyone who purchased a Steve O shirt! Steve's fund made $2,100 from all of your generous contributions on the T-shirts. Courtney placed the order and she should have the shirts the end of next week. Thank you Courtney! Also, there is going to be a Car Show and Yard Sale Fundraiser at Hazel Green High School on June 14. (psst, Kris, if you email me the flyer, I'll post it. xo)

6.4.08

Hey all. I have to be brief. I just bugged some eight-year-old to give me computer time in the family room here so that I could get one more post in before I leave.

Steve had his outing to Best Buy today. It went really well. Steve went with two other patients on trachs. The van ride was a little bumpy, but it all went smoothly. Steve was able to pick up some new albums, Three Doors Down, Kid Rock and the Foo Fighters. I am a little bummed we won't be able to listen to the new Foo together. Truth is I am just sad to be leaving. Saying goodbye to Steve is so, so hard, as some of you are very aware.

Steve slept really well last night I am so happy to say. He has his swallow test in under an hour. I have to shove off for the airport at 2. And I have a connection, so I won't be back in NY til late. I'll give you all an update as soon as I can.

6.3.08

Steve was upset yesterday afternoon. He has so much on his mind, a million thoughts and concerns. We tell him to be positive and patient and to take one day at a time. It's so tough.

He fell asleep around 8 and slept well for the first half of the night. But he was up intermittently starting from about 3 AM on. At about five this morning, they took his temp and he had a fever of 101. Damn, he had been doing so well on the fever front. But by eight, it was 98.4. They took a ton of cultures, and my fingers are crossed that it was just an isolated thing and not the sign of an infection. Oh and to even the Mozart out, we listened to a live Ozzy Osbourne album this morning. We talked about shows we've been too and Steve smiled at Ozzy chatting up the audience.

He had PT this morning. Katie put electrodes onto his leg muscles and the muscles contracted. That doesn't mean that he can feel anything, but it does mean that his muscles are responsive—which is a positive sign. Also, he's making progress with his neck exercises. He can move his head slightly left and right, and you can see his neck muscles working. That's a huge improvement.

It's hard for Steve to feel good about these small milestones, when he so desperately wants the basic functions of breathing, talking, and, eating. He does have a swallowing test scheduled for tomorrow afternoon. So please, please continue your endless prayers, and sending your hopes and energy toward these vital functions.

6.2.08

Steve's asleep, comfortably relaxing in his chair. I recently read an article about how Mozart reduces stress hormones, promotes healing and stimulates growth hormones—so MaryAnn and I went out and bought him a couple of CDs. I know what you're thinking, Steve…Mozart? But it put him right to sleep. And sleep is good. You have to be open to anything.

April stayed with Steve last night. They watched a movie and then got some shuteye. But at one point during the night, Steve lungs needed to be suctioned, and because no one was bagging him (manually pumping oxygen into his trach) between suctioning, he blacking out for a few minutes. Very, very scary.

Steve had physical therapy (PT), followed by occupational therapy (OT). During OT Steve asked if that instead of playing a game—if he could work his arms. So he worked with them in a sling for a little while, and then focused on his seeing if there was any sensation with massage. Though he couldn't feel anything in his arms, you never know what tomorrow may bring. Steve's working to stay positive and hopeful toward every tomorrow.

Please keep the comments coming. Your voices from beyond these walls are so encouraging to Steve. Thanks everyone!

6.1.08

Steve had a pretty relaxed day today. He slept well last night since Kris slept in his room. He admitted to me this morning that he sleeps better when someone is with him. He got to stay in bed past noon then he got into the chair. A little after 2, Kris had to hit the road, which was tough on Steve. But shortly thereafter, April arrived and we went downstairs to the family room with a pool table, large screen TV and some windows. It's actually the room leading to outside, but it was too warm to venture out at that point.

A little over an hour later, we came back to the room. Steve started to not feel well, so he got back into bed around 5ish. April has had him smiling plenty. She really is like sunshine to him. It's pretty awesome.

I've been reading Steve some excerpts from a book I found in the library here called The Miracle Man. It's written by a man who had a C1-C2 break from a plane crash—and then went on to make some really miraculous recoveries. I told Steve that it's hard to be know what to say since I am not in his situation, so it just might be my job to bring him the voices that offer encouragement because they have been in the same place.

So overall, Steve had been feeling okay. Sometimes, he starts to feel warm in the afternoon, but once he is in bed and resting, he seems to feel better. His calendar for this coming week is pretty full between the hours of 10 and 3. He has physical therapy and occupational therapy, and then some educational sessions in his room in the afternoons. More soon. Thanks for you continued support and loyalty everyone!