12.30.08

We were so grateful to be together as a family over Christmas. There were 16 of us sleeping under one roof. Yes, it was as crazy as that sounds. Unfortunately, since Steve had to get IV medication, none of us were able to help MaryAnn and Joe with the overnights. That was really frustrating since there is so little we can do to help, but administering the IV meds was such a medically complex process, and they were the only ones who could do it. But as of Sunday afternoon, Steve had his last of the IV antibiotics. Yesterday, a nurse came over to remove the line.

Steve has been feeling good. He had a fevers during the week, but as of yesterday, he had about three days of no high temperatures and was feeling better. We had a couple of scary moment with clots like the one I described at the beginning of the month, but in each case, someone responded immediately and got air to Steven quickly. The morning are still a tough time since he continues to have severe leg pain then. Sometimes he's able to sleep a bit which is helpful, and then he gets up in the chair later in the afternoon.

Thanks to all of your thoughts and notes; I was able to share them with Steve on Christmas night.

I believe that the new year is going to bring great progress for Steve. It's a new start and I believe it contains that one good thing we've been waiting for, whatever it might be, and many others. I believe Steve is going to get stronger and return to his neck, mouth and swallowing exercises. I believe we are all ready to say goodbye to 2008. And I believe in every possibility for Steve in 2009. Positively.

12/17/08 Updated

Steve's not doing well. He's been dealing with fevers on and off and pains throughout his body. He's been on a couple of different antibiotics as they try and get the lung infection out of his system and we just don't know if this is contributing to his overall fatigue and discomfort. The doctor came to the house this morning and called for an ambulance to come and take Steve to the hospital so that they could give him and IV for his antibiotics. He was there most of the day and they just got home a little while ago. The IV line will allow him to have a different, stronger antibiotic, which he will be on for ten days. We pray this will eliminate any infections in his system and leave him feeling much better.

For those of you who don't know, Christmas was Steven's most favorite holiday. From a pretty early age he would bug MaryAnn, asking to go onto the roof to cover it with Christmas lights. And so that's exactly what he did to Kris's roof last year. In Steve's mind, there was no such thing as enough lights.

He's been having a tough time these past weeks. He probably needs you now more than ever. If you are reading this, please post a comment. He needs to feel love and support. If what you want to say is too personal, or if you are having trouble posting a Comment, please email me directly at jpannasch@gmail.com. I promise to share all of your words with Steve on Christmas Eve or Christmas day, whenever the moment feels right.

On December 22, it will be nine months since his accident. That is 275 days of silence and stillness. Please bring your words into his space. I want to read until my throat is dry. I know you guys can do it, you've done it before. I leave for Alabama on Tuesday, and I may not post again until I am there. So please just say something to let Steve know that you are still thinking about him. We all appreciate it! And Merry Christmas to you and yours. xo Aunt Jean

Happy Birthday MaryAnn!

I am sorry that I haven't written earlier than now, but I just got back from the airport, that is, back from Alabama! Yup, I flew down for about 48 hours to surprise MaryAnn for her birthday, which is today. I was going to share that with you all before I left, but I was too afraid of spoiling the surprise. And the surprise went like this: I wore a blonde wig and ducked my head into Steve room. I had a scarf around my face, and MaryAnn just stared at me, I think she was actually about to throw me out because she didn't know who I was and what I was doing in Steven's room. And then I spoke and she was thrown, since I sounded like her sister, but we were just on the phone and I told her I was just back from grocery shopping. Finally I revealed myself and told her, "Happy Birthday." She had no idea. Steve knew about the plan the whole time--he said it was a good surprise!

It was wonderful to see them again, of course. Steve looked good, he was feeling a little better than he had been previously during the week. On Saturday morning, the ENT doctor came and had Joe change Steve's trache. Props to Joe, that's a pretty serious deal. The doc said again that his throat was healing well, and that he would continue to change the trache about every ten days so that the scar tissue does not have a chance to grow around it. We are hoping that Steve will soon be able to try a new trache, which would allow air to pass over his vocal cords, possibly giving him the ability to speak. Let's put our collective energy and prayers towards that thought. Please.

We had a scary moment last night. I was talking to Steve, explaining how hairy I find the roads there to drive at night (I had drove my rental car out to dinner with Mare, Ashley and my mom for Mare's birthday) and the road home was windy and dark and I was a little freaked out. Anyway, as I was talking about the new concrete power poles going up on Steger, his vent alarm went off. As MaryAnn had told me to do, I asked Steve if he could breath. He replied, "Get the bag," meaning that his vent was blocked and he wasn't getting air. I tried to use the ambu bag, as I usually do when we suction his lungs, but for the first time ever, when I tried to squeeze it, there was resistance and I couldn't get a breath into him. MaryAnn, Joe, Kris, Ashley and Grandma came running into the room and thankfully, Joe took the bag and forcefully squeezed it to get air into Steven. MaryAnn ripped open a lung suctioning kit and immediately unhooked the bag to put the suction tube into his trache. Within milliseconds, she was able to get and dislodge the clog, and Joe refastened the bag and was able to get breaths into Steven. He was okay.

I can't begin to describe what this intensity felt like. I asked Steve if that was as scary as it gets, and he said yeah. He closed his eyes. I stroked his hair, not knowing what to say. He deals with the possibility of moments like this everyday. As do the rest of the family. As my plane took off, and I headed north, I was overwhelmed by the love that I witness every time I go down there. I have always felt lucky to have a big, loving family. But 265 Chipmunk Circle is a remarkable place that I feel so fortunate to witness. I just feel the need to say that. I am sure that some of you feel the same way.

Steve did not have a fever while I was there. Hopefully, the antibiotic that he's been on is kicking ass against the lung infection. He was still really tired though. His medications knock him out at 5 PM and then he has a hard time sleeping at night. That was the case last night. This morning he told me that he was up from about 3 AM on.

I think that's about it for now. To everyone who has continued to bring food by the house throughout all these months, the family thanks you. I have often benefited from your delicious generosity. I know that it is an enormous help for Mare and Joe. And as always, thanks for checking in. More soon. xo Aunt Jean

12/3/08

Steve has a lung infection. Unfortunately, this bacteria does not seem deterred by antibiotics, so we've just got to wait for to get well on his own. This is the reason for the fevers and the exhaustion (he's been sleeping more). Mare and Joe have needed to suction his lungs a little more often. Please pray for this infection to leave his system so that he can feel stronger and so that his lungs become healthy. Thanks all.

12/1/08

Steve's not feeling good. He's had a fever over the past few days. He's been sleeping in in the mornings. Morning time for him, from about 8 to 11, is the worst. He's just really uncomfortable. I haven't talked to Mare yet today, but this was the update after speaking with her yesterday.
On a brighter note, Jennie B brought him over a John Deere christmas tree, which is on his dresser so that he can see it when he's laying in bed. MaryAnn was telling me how much she likes having it on in his room. And I'm sure Steve does too. Thanks Jennie.

Happy Thanksgiving

Steve and his family have asked for me to wish all of you a very happy thanksgiving. They are so thankful for your unwavering support and love throughout these last eight months. We all hope you have a wonderful day with your loved ones. Happy Thanksgiving!

11.22.08

Hey all! Sorry I have been absent, was waiting to see if we got some news from the doctor. I know that some of you were worried since you hadn't heard from me, so I'll try not to stay away for so long. I understand that even an uneventful post is a worthwhile post.

The ENT doctor came to Steve's house this week to examine his throat and change his trache. He said that he looked through Steve's file, and there is no indication, from previous exams, that his laryxn is crushed. This is great news because it means there is still potential for possibly speaking down the road! He also said that he thought the scar matter in his throat, seemed to be doing well. He is going to be coming to the house to change the trache with regularity, which should help. This is great news!

Steve has been doing okay, he's been infection-free (Yes! more good news),but he's been sleeping a lot and not too motivated to get up on some days. Steve Willet is still able to rouse a smile, as well as small group of Steve's core friends who visit with regularity. He's expecting some company this weekend, so I'm sure that he'll be up earlier than he has been. And on Tuesday, my mom and dad, Joseph, Debbie, Bryan and Patrick arrive for the Thanksgiving holiday. Between Thanksgiving and Christmas, a ton of family is going to be descending on Chipmunk Circle, so Steve won't have much downtime.

When I was about sixteen and quite content to sleep till midday on Saturday mornings, MaryAnn would come to our house with Kris and Steve and they would make their way up the stairs, bursting into my room with all their pint-size,boisterous, blond energy. They'd jump on the bed and there was no other choice but to get up. And I was entirely thrilled to do so--they were my little buddies. Well, you know what they say, "What goes around comes around." So that's pretty much what I intend to do every morning that I am there for Christmas. Pounce into the room well before Steve's ready for me. And I am sure Sadie, Bryan and Patrick will be my pint-sized accomplices!

11.10.08

About time I got a new image up there, right? I have been trying for some time to make it bigger, but I just can't figure out how. And as you can see, it's getting late. I do hope to figure it out soon. In the meantime, I'll let you know that Steve had a great visit with the family. He's been sleeping a lot and he's had fluctuations with his blood pressure, specifically low blood pressure, but that is to be expected with this type of injury. I don't have a lot of news to report, except that all the love and hope is as strong as ever, just in case you were wondering. More updates soon. Love, Aunt Jean.

11/3/08

Steve had another doctor appointment last week. This was the rescheduled appointment with the ear, nose and throat specialist and the pulmonologist. The preliminary news is not good. The doctor feels that there is something similar to scar tissue, suppressing things in the back of Steve's throat. He said that he would need to operate and remove that in order to assess the rest of Steve's throat function. He also wanted to do more research and gather more information and get back to them.

Since Steve's swallowing still results in liquids flowing into his lung, the doctor was not in favor of the double cuff trach tube which can, in some cases, allow speaking. So we are holding out hope that we can find promising information for alternatives and of course, praying that function will just return on its own with time.

Friends were over yesterday to celebrate Johnny's birthday which was great for Steve's spirits. Regular visits from a few close friends are what really sustain him these days. They make a big, big difference. On Wednesday, he'll have lots of company when Uncle Joe and Debbie come to visit--along with Bryan who turns that day, and Patrick who is three. I think it's going to be a great time! The boy are so excited to see Steve, not to mention the big love and smiles from Joe and Deb. Have a great time everyone!

10.27.08

Overall, the results from Steve's doctor visit last Thursday were inconclusive. The specialist he saw was unable to remove the trach tube sufficiently to fully examine the vocal cords. However, he was optimistic, and said that the cranial nerve can take up to 18 months to heal. Therefore, it may be a little more time before Steve regains some abilities in his throat. The doctor did say that Steven's larynx was weak and he explained to MaryAnn some exercises that she could do to strengthen it. So, no bad news and hopefully we will have more details soon. This specialist is setting up another meeting, with Steven's pulmonologist on hand, so that he can better examine the throat area behind the trach.

In other news, Steve had a visit from Pete and Tara (from Montauk) yesterday. Since they have been busy with company, I haven't had a recent check in on how Steve's been feeling. I know that he still battles morning discomfort in his legs. And I know that he has been able to spend time outside, now that the weather is cooling off. I'll write again once I get to talk to MaryAnn in the next day or two.

10.20.08

Steve had a visit from Lex this weekend. Yes, Mr. Luger came with Regina, one of Steve's nurses from Shepherd, all the way from Atlanta and they stayed until after 9 on Saturday night. If you haven't been around Lex, he's something! He makes Steve smile plenty with his endless stories and inspiration. He's exactly what Steve needed. Steve has a big appointment this Thursday with the ear, nose and throat specialist. They will be testing his vocal cords. Lex said that this is what he is going to be praying for this week, and hopefully so will all of you. Steve's ready for some good news. So please put all of your hope, thoughts and prayers toward Steve getting a positive report. Please let the tide turn starting this week.

Now that the weather is cooling off, Steve been able to spend time outside. Over the weekend, he guided Joe through changing a pool pump, which provided some entertainment for sure.

My brother's fundraiser on Sunday brought out many, many wonderful people in Montauk. Below are some photos for you, but also for Steve to see some familiar faces.

10.14.08

Steve got his new glasses yesterday. They improve his vision a little. When they got back to the house, Steve was using the sip and puff to drive his chair in the driveway. When MaryAnn saw him cutting close to her car, she figured he was messing around with her--typical Steve. And then he got faster, heading down the driveway. Again, she thought he was kidding around. But what had happened was that the straw of the sip and puff was too far into his mouth and so he couldn't operate it correctly. He couldn't stop. He got the the end of the driveway, and the wheels on the one side went over the lip--and he fell. The chair tipped and the head piece released his head because it got mangled in the fall and his head came forward. MaryAnn and April ran down to him. A neighbor came over to help. Luckily, his vent tube did not come off and he did not sustain any injuries beyond a scratch on the leg.

It's been a tough week and when that's the case, I don't know what to write. Steve's been down. Very sad. He hasn't wanted to watch movies or television. If you're reading this I know you care deeply about Steven, and I know we all struggle with how to be there for him when we aren't able to be with him physically. And even when we are, we cannot know his experience, which makes it difficult to know what to say. But we try right? That's our job. To bring him hope and all of our love. To at least try, in any way we can.

And on that note, I send my gratitude to my brother and sister-in-law, Joseph and Debbie, and my high school friends Stacey and Gene (yes, Steven's coolness transcends his youthful years and allowed friendships to flourish with friends as old as me) for hosting events in honor of Steven this weekend. The whole eastern end of Long Island will be flush with thoughts, prayers and love for Steve. I 'm pretty sure there'll be enough Long Island volume and power in those crowds to carry south and shine directly on you Steven. I'm sure.

10.08.08

Steve had a good birthday! He was surrounded by friends and family. It was a long day, but he smiled plenty. Thank you for all the comments, cards and company. Kris gave him a jackalope for his Man Cave, and the room is really shaping up.

I was happy to see that Steve's put on some weight since the last time I saw him. He seems to be on the mend with the infections. He's been working on trying to swallow and getting back to his neck exercises since he took a few days off while he was sick. The weather was still quite warm, in the upper 80s. We got to sit outside on his porch the one day, but once he got back inside he didn't feel well and felt that he had been out for too long. His new glasses will be done on Oct. 13. Hopefully they will make a meaningful difference for his vision. The toll of constant overnight duties for MaryAnn and Joe is unbelievable. I just don't know how they have been doing it.

I was glad to get in some girlie time with MaryAnn. We took Sadie to the pumpkin farm, and fetched Kris and Steve some very heavy pumpkins, while the boys stayed home and watched football. As always, the visit ended way too soon. Time goes so quickly and leaving is so very difficult.

10.1.08

Hooray! Steve felt much better today. Yesterday morning he was switched to a different antibiotic, and so far it seems to be working. We are hoping that the cultures confirm that, because if not, the doctors would like to move Steve into the hospital.

Since it was such a beautiful day, Steve got outside for a bit. Yesterday was the last day for the nurse, Tracy. It was a tough goodbye and now the search begins for someone new.

I have been reluctant to share the news of Steve's eye exams. I guess I thought that if I didn't write it here, then maybe it wouldn't be so. But, the exam revealed that Steven has no vision in his one eye, and very poor vision in his other eye. He's legally blind. He did get a new prescription that will aid his one eye, and so we're hopeful that the new glasses will allow him to see a lot more than he can now. Obviously, the next step will be finding the assistive computer technology that will be suitable for his visual abilities.

I fly down to see Steve for the weekend tomorrow, bringing along my husband, Andrew, and my daughter, Sadie, for the first time since the accident. We'll be there for his birthday, which is Sunday. And I've been thinking about something we--his family of hope-- might be able to do collectively for his birthday. I've decided that I would like to request that everyone who reads this blog, think about Steven, sending love, prayers, meditations, chants, hopes, wishes, however you wish to express your support and encouragement, at exactly 12 PM, Alabama time.

And for that, I send you all my thanks and love.

9.30.08

Just a quick update...Steve's not feeling much better. He's still very uncomfortable. His doctors have requested another culture to make sure the antibiotics have been effective and have reduced the infection. We should know the results in a few days. In the meantime, please keep Steven in your thoughts. He's had a really tough couple of days.

Weekend Update

Steve isn't feeling well. He has two infections, a UTI and an infection in his lungs. He's on two antibiotics which should wipe his system clean, quickly we hope. Yesterday he was very, very uncomfortable. He stayed in bed and after a restless morning, he was able to fall asleep for the later portion of the day.

Please send our your love and hope that he makes a quick and thorough recovery as soon as possible.

Six month update

Tomorrow marks six months since Steve's accident. He's come a long way, for sure. And we all maintain massive hope for great possibilities for his next six months!

Steve has an optometrist appointment on Thursday--which is fantastic. We hope that he'll get a new prescription which will greatly improve his vision. With that, he'll be better able to use the computer with assistive technology. And since one of Steve's biggest battles is boredom, you can imagine how extraordinary getting online will be for him. I'll keep you posted on how that goes. He's still waiting on the necessary equipment.

On Saturday Steve went to the "shop" for the first time since he's been home. For those of you who don't know, the "shop" is Jeremy and Jason's workshop, where Steve and his friends worked on their jeeps. From what I can tell, it's a world of boy toys and Steve spent many, many hours there. Anyway, the industrious boys used some old street signs as wheelchair ramps, and they were scrambling till the last minute getting the place together before Steve's arrival. Steve went to check out the jeep that they are building for Jeremy Edwards, and the buggy that's they are building to sell. And he also got a Lee's Magic Tunnel Car Wash treatment as the guys spiffed up Steven's wheelchair tires.

Unfortunately, Steve's spasms continue to bring him immense discomfort and unease. We hope that they will calm down, perhaps once he has more regular physical therapy. Please pray for him to have more peace and less spasticity within his body.

Steve had some other wonderful visitors this weekend. Paula and her friend Debby came over with Kylie on Saturday night. And today his friends John and Abby came by with their little guy. As always, visits are their own kind of special medicine.

Thank you for continuing to come here to check in on Steve. We deeply appreciate your love and support.

Weekend Update

Steve had plenty of company this weekend! Friday he had visits from Courtney and Jim, and Jeremy, Melissa and Sydney and later in the day, Paula and Kyle. Saturday he had a good deal of boy time watching football games on the big screen with Kris, Bubby, Adam and Dirty (sorry If I am forgetting anyone!). April was there too!! Steve also had a visit from Chuck from Hunstville Utilities. Glad that he was able to enjoy so many friendly faces--love and light for the spirit.

Uncle Joe has been busy planning a Montauk fundraiser for Steven which will take place on October 19th! The event itself will take place at Rick's Crabby Cowboy Cafe at 2 PM. I have a feeling the entire town, along with many friends and family from around the island, will be there. We're so excited about it! (Steve--How much you want to bet that Cheech will be there with his wig on? He better, right? We love you!!!)

9.9.08

Steve had a good day on Saturday. He spent some of the day at Kris and Ashley's house. Their house is one level, which is great for Steve. When they got home, Steve and MaryAnn and Skippy when on a little cruise down the block. How wonderful to have some fresh air! Cooler days just can't seem to come quick enough.

Unforunately, Steven's nurse Tracey will be leaving at the end of the month. This is terrible news. She was dependable and sweet and really took good care of Steve. So now the search begins again for a new caregiver.

Before I forget, Steve's birthday is October 5th. He'll be 24. I'm just letting you know early so that you can get your cards in the mail sooner than later. What's an Aunt to do!

9.7.08

Hi all! This is a photo that I took on the grounds of a monastery that was built in 1759. Like you, I think of Steven all the time and so this is a spot where I said a prayer for him and took a photo of the well-worn bracelet that Sarah, Ashley's sister, made me oh so many months ago.

Yesterday the crew was heading out on Steve's first trip to Kris's house! I hope to get more details on that later, but I am sure that the change of scenery and the comforts of his brother's home were great for Steve.

MaryAnn and Joe hope to have an appointment with the eye doctor soon. The new doctor, whose office is wheelchair accessible, is hoping to squeeze Steve in the next week or two. Steve desperately needs a new prescription so this is great, great news.

Last Sunday Steve was able to practice maneuvering his wheelchair in the driveway. It was still very warm, but he was able to cruise around for sa bit. He apparently switched the chair into high gear and took off so fast that Joe and Kris had to chase him. And of course, once they caught him, he was laughing. As the weather cools, I am sure there will be more tales like this one. Classic Steven.

More soon. xo Aunt Jean

8.25.08

The techs from the wheelchair company came and brought over the wheelchair parts that Steve had been waiting for. The pole for his feeding tube was installed, as well as his new head piece. These elements will allow for more mobility. Now Joe can attach Steve's portable vent so that he will be able to move about more freely. This is huge! The chair is much more comfortable and Steve's just about all set to go!

Steve had tons of company today. It was Joe's birthday. And Kylie's, she turned four! Happy Birthday Joe and Kylie!

Below are the photos from my recent visit to AL. Steve looks pretty great huh? Nice to see that smile. And the place looks amazing, doesn't it?

Tomorrow I leave on a trip to Greece for one of my best friend's weddings, so I won't be posting for the next week or so. In the meantime, feel free to keep Steve busy by dropping a line of encouragement and love. Thanks all, I'll see you soon. xo Aunt Jean.

6.20.08

Here's a photo from a party that Marie had with friends after last Saturday's basketball game. Everyone was so moved by Steve's fight and determination, that Team Steve-O just keeps growing and growing. The fundraiser was an amazing success. Once again, thank you to each and every person who contributed and particpated. The whole family is so grateful.


Movie night was a hit last night. Steve had quite a few laughs. They are changing the format, and going to go with one movie, so there is more hang time. Ya know, boy bonding. Good stuff. Kris and Asley slept over last night and Steve's lungs seem to be much improved over a few nights ago. MaryAnn and Joe located an eye doctor who has a wheelchair accessible office, so now Steve will finally get to receive a new prescription once they schedule an appointment. That's all for tonight folks.

8.19.08

Thanks for the offers of help with the inventory! Thankfully, MaryAnn's got the help she needs now.

Steven's chest is sore from the increased amount of suctioning due to the sinus infection. He's also had a low grade fever on and off and some temperature discomfort.

Yesterday Steve had a visit from a company that will be able to supply him with assistive technology. That's great news because it means that down the line, he will be able to access his email, etc. We're not sure exactly when he will have the software to begin, but it's so exciting.

My parents leave on Saturday and Nana and Aunt Karen arrive that day for a week's stay.

8.18.08

Steve's doing okay, a little bored maybe, but okay otherwise. The sinus infection gave him a lot of fluids over the weekend, so he needed to be suctioned a lot, but hopefully, it's almost out of his system.

The jeep is at the house; it has been for a couple of weeks now. Steve had asked for it to be brought there, and Jeremy drove it past the window so that Steve could see it. Steven loves that jeep, no question. When we were down there, Steve told Uncle Joe to go out and start it up (he really wanted for Uncle Joe to see the engine he had put into it). I heard it revving from upstairs. Since my Dad has been there and is not one for sitting still, Steve suggested that he wash the jeep, which my Dad did, top to bottom.

I updated my profile to include my book suggestions, but unfortunately, the format of that window automatically turns everything into a link (as in, it's in blue and underlined). I would add that text into my profile, but there is a limit on the word count. I just wanted to let you know why it looks so funky in case you check.

One thing that I've been meaning to mention is that in the Christopher Reeve book that I recommended, he says that he had 17 full-time staffers. Same injury as Steve: 17 people helping out. How's that for perspective. And on that note, MaryAnn could use a hand creating an inventory list of Steve's medical supplies from someone who can swing by the house to do it. I only mention that in case anyone reading this is a whiz at excel, has a mind for organization, and a little time on their hands. That was something we had hoped to tackle while I was there, but we were just so busy with other stuff.

I should know later today or tomorrow the total of the Enterprise funds. We'll keep a continuous drum roll until then....

8.16.08

Thanks to everyone for your participation at Steve's fundraiser today. Below is a recap from Aunt Karen, as well as photos, including one of Marie--who made today's event possible!

Everything was great. The storms came through last night and cleared for Steven today. It was Alabama hot on Long Island but the players didn't mind. It was a fun day for all. The winners even got a gold (paper) medal. I don't think the NBA has anything to worry about. Thanks again to Marie from 1042 Collision and all of our new friends at Enterprise Rent -A- Car for setting up today's event. Thanks also to all of the wonderful friends, relatives and strangers who have contributed toward Steve's donation fund, your generosity has been overwhelming.

REMINDER: LONG ISLAND FUNDRAISER TOMORROW

Hey everyone,

Lot of family and friends will be on hand to support this fundraiser exclusively for Steven! If you can make it, please come on out and share the love:

WHAT: A Basketball Game Competition that will knock your socks off! ALL ARE WELCOME! The local offices of ENTERPRISE RENT A CAR will be challenging each other, on the court this time!
ALL are playing to win for ONE REASON...STEVEN J. COLLINS!

WHEN: Saturday, August 16, 2008, 2 P.M. Sharp

WHERE: Gibbs Pond Road Park in Smithtown, New York

Get there early to meet, greet and get a good seat! All profits from the game, concessions and others will go directly to supporting Steven and his rehabilitation.

THANK YOU THANK YOU! xo

8.14.08

Steve had a visit to the pulmonologist on Tuesday and the checkup went well. He had needed lots of suctioning the night before the appointment, and the doctor determined that Steve had a sinus infection, so he's on a course of antibiotics. Since Tuesday was also movie night, Steve ended up being in his chair for about 11 hours total! He had a pretty active day, and unfortunately yesterday, he was very uncomfortable. He was napping when I spoke with MaryAnn.

The responses that we've received from the Fundraiser post have been amazing. People indeed reaching out from far and wide! Thank you everyone! Unfortunately, I will not be able to be at the game on Saturday, but I hope that anyone who attends will send me photos (my email is jpannasch@gmail.com). I know it's going to be incredible!

Long Island Enterprise Rent-a-car Fundraiser

Our very dear family friend Marie Malerba at 1042 Collision in Farmingdale, Long Island has shown her enormous heart and love in organizing a fundraiser for Steven this weekend. Basically, Enterprise Rent-a-car will be collecting funds this Saturday at a benefit basketball game, as well as throughout the week at various body shops in Nassau County. And Enterprise will match whatever funds are raised!

Below are all the details:

PLEASE join us in our mission to make a Slam Dunk in donations for Steven J. Collins!

WHAT: A Basketball Game Competition that will knock your socks off! ALL ARE WELCOME! The local offices of ENTERPRISE RENT A CAR will be challenging each other, on the court this time!
ALL are playing to win for ONE REASON...STEVEN J. COLLINS!

WHEN: Saturday, August 16, 2008, 2 P.M. Sharp

WHERE: Gibbs Pond Road Park in Smithtown, New York

Get there early to meet, greet and get a good seat! All profits from the game, concessions and others will go directly to supporting Steven and his rehabilitation.

IF ANYONE knows someone that works for or uses ENTERPRISE RENT A CAR services, PLEASE tell them IMMEDIATELY To participate. ENTERPRISE is a National Company that prides itself on Service with a motto that states “We’ll Pick You Up”. Let’s ask every office to support their own slogan and “PICK UP” Steven’s cause! Don’t Wait, Don’t Hesitate…..Call and DONATE NOW!

The Last Shot Clock for collections and any that can’t make the game is August 18th, 2008! Please get them in because at the stroke of midnight we will add up all donations and ENTERPRISE RENT A CAR WILL MATCH IT! This is One Shot You don’t want to miss!

If you cannot make it to the game on Saturday, you can drop your donations off at 1042 Collision at 1042 Fulton Street in Farmingdale through Monday (Marie promises a free personal hug in exchange!) Please make all donations to:
Steven J. Collins Donation Fund

On behalf of my family, I extend many, many thanks to Marie, as well as Alex Kushner and Matt Sollecito at Enterprise for helping to pull this event together.

8.11.08

I have not had a chance to be on a computer since I returned on Thursday, and I apologize for not updating everyone sooner. The night before I left we watched a few old home movies (thanks April). After watching some embarrassing footage of me circa 1990, I realized that between that and the Rambo movie, Steve definitely takes a little delight watching me squirming in my seat. Seriously. That fact was only reinforced at another moment when I thought that Steve was going to fall forward in his chair, and I reacted by calling MaryAnn repeatedly. Once Steve stopped the tilt on his chair, I looked and him and he was smiling, definitely at my panicked response. I am telling you, he loves to watch me squirm. No wonder why he wanted to watch the other Rambo movies. We had hoped to watch the first in the series, but time got away from us as it often does during visits. So, I'm thinking that on my next trip down, we should have a girlie Rambo viewing. If we multiply my squeamishness by a room full of girls-- that just might make his night.

Steve had an okay day today. My parents arrived on Saturday, so I'm sure he's been amused watching my Dad dart about. Yesterday he had a slight fever, and some leg pain but thankfully he was feeling better today. Since the temp has dropped some, he's had a opportunity to get out into the driveway and practice driving his chair on a few nights.

I have some photos of Steve and his new place to upload once I am back home. Well, tomorrow is movie night. I know the need for furniture to seat all you boys is real. They're working on it. Hope you guys all have fun and I'll be back as soon as I can. Again I apologize because my computer time this month is really limited. Sorry all!

8.6.08

Steve had a packed house for movie night last night. I had to walk through two rows of boys to get through the room. Pretty awesome. I know that Steve had a good time. The flicks were Semi-Pro, and then Spies Like Us, which seemed to earn more laughter than Semi-Pro. Uncle Joe stocked Steve with a bunch of new movies before he left.

Steve's been feeling pretty good and sleeping through the night, for the most part. His chair has been re-programmed and yesterday he got to drive it very briefly. It's going to take some time to get used to. Kris is going to mount the vent onto the back, and they are going to add a pole to hold his feeding bag, and then he will truly be mobile. The chair is so zippy now that trying trail Steve with the vent pole is tricky. And as you might imagine, Steve's pretty fast. We've been talking about how he needs to get out into the driveway to practice, it's just been so damn hot. Joe keeps saying that he's going to get him up at the break of day so that the temp is tolerable. Sounds like a plan. I know that Steve is ready to go.

When I asked Steve what he would like for me to tell his fans, he said, "I'm OK."

And indeed he is; Steve looks great. We think he has put on some weight since Shepherd, and his smile definitely seems closer to the surface than it was there.

The amazing house design allows him to come out into MaryAnn's living room. So we watched some home movies that Uncle Joe brought of Patrick and Bryan and his boat, and even some footage of doing a pool repair, something that Steve is very familiar with. Last night we all watched Rambo 4 together: Steve, MaryAnn, April, Kris, Ashley, Uncle Joe, Cheech (Steve's old partner when doing pools), and me. As I cringed and fidgeted from the goriness, Steve smiled wide. It was bizarrely wonderful.

His new living space is beautiful. I personally extend big hugs and thanks to everyone who had a part in bringing Steve's home together in the time you did. It's astonishing. Wow.

Unfortunately, Steve's been waiting on new pieces for his electric wheelchair, so he hasn't been able to be as mobile as he would like. But the repair guy is due to come this afternoon. We are crossing our fingers that he will be good to go after that. Although the manual chair is great, Steve really wants to be moving on his own. Our first excursion out will be to Kris's house (Kris lives very close by) and we hope to be able to do that all together today or tomorrow.

The workload for Steven's care is immense--it cannot be overstated. And it's around the clock. I do not know how these guys have been doing it. They have Tracey during the day now which is great, but they cannot continue to not sleep through the night.

I'm going to get back to Steve. These last few days here have been hectic and head-spinningly busy, but more than anything, it great to see Steve smile and it feels so good to all be together.

8.1.08

Hey, I miss you guys! It's strange to not have been with you for a few days. Steve's had ups and downs in that time. I'll be able to give you a better report once I am there in the morning. I leave at the crack of dawn so I land at 9:30 A.M. Joseph flies into Nashville and then is driving from there, so he'll arrive around 11:30 AM. We're both so, so excited. More for AL!

7.29.08

Steve had a solid day yesterday. No temperature, slept well the night before, and he was feeling good. When I spoke to Joe last night, it was around 8 and they were gearing up for Steve to get back into bed.

Joe and Steve Willet did the overnight with Steve last night. They were all up a lot; it was not the most restful night. But Steve's feeling okay at the moment. MaryAnn is giving him his breathing treatment and the nurse, Tracy is there.

Tonight's movie night. Awesome. Dudes filling the man cave, I love it. I keep threatening to bring Sixteen Candles for movie night next week.

MaryAnn and I talked about the blog a little bit and what would be the best frequency. We are thinking that maybe a post once a week would be better--this way I am not calling everyday, sometimes twice a day for details. They have their hands full 24/7. That doesn't mean that you can't leave comments throughout the week, especially those of you who don't get to see Steve regularly. Steve still needs to hear from every one of you. Everyone!!

Also, please stay tuned for my list of resources which I will be adding to my profile page. There have been a number of books that I have come across in the last few months which offer some interesting insight and practical nuts and bolts information about spinal cord injuries. Some of you might be interested in checking them out. Once again, thank you, thank you.

7.27.08

Hey all. I apologize for the delay in posting, everything is fine, I hope I didn't have you concerned. I was away for the weekend at a friend's, and when I said that I needed to use the computer for the blog, she apologized and told me that her computer wasn't working! I just got back a few minutes ago.

Steve had a rough couple of days--fever, discomfort, fear, lack of sleep--just awful. Thankfully, Saturday afternoon and today were much better for him. He had a little crew of visitors today, he was up in his chair fo a while and overall, he was feeling much better. Kris and Ashley stayed for the overnight last night, and April is staying tonight.

It looks like they may have found a respiratory therapist, who hopefully, will be coming once a week. Keep your fingers crossed that that will work out well.

I head to AL on Saturday morning. My brother, Uncle Joe, arrives Saturday too. Although it's not ideal that our extra hands will be there at the same time--it sure will be nice to all be together. I really can't wait. It's been a while now.

Here's hoping that Steve has a great night's sleep tonight and feels good all day long tomorrow. I know we all hope and pray that each day brings a little more comfort, rest and ease for everyone.

Update and Addresses

Steve's been sleeping a lot today. His vent numbers have been a little off, so MaryAnn and Joe are monitoring those closely. Steven really needs a respiratory therapist who can come see him. Fortunately, Joe's cousin Donald (who is a doctor) can back last night, so he's able to keep on eye on this too. They have made some calls and are waiting to hear back as to whether or not someone will be able to come and assess the issue.

At 8 this morning, the nurse showed up and so far, so good! Her name is Tracy; she lives nearby and used to work at Huntsville Hospital. Her shift will be 8 AM-8 PM.

Nicky, here is the home address:

265 Chipmunk Circle
New Market, AL 35761

Also, I know that recently some asked about the donation address, so here is that info:

Steven Collins Donation Fund
220 Wynn Drive
Huntsville, AL 35893


Thanks everyone!

7.23.08

The crew has deemed Tuesday night movie night. And while last night's movies weren't great--the company was awesome. Bubby, Dirty, Adam and Brian watched two flicks with Steve and then rounded out the night watching The Deadliest Catch. The access to friends has done wonders for Steve's spirits.

Tomorrow morning an agency is sending over a nurse. Let's all cross our fingers that she is amazing.

Steve was feeling good this morning, his blood pressure was fine and his temperature was only very slightly elevated. And best of all, Steve was not uncomfortable. And MaryAnn gave Steve a breathing treatment herself yesterday. Go Mare!

April stopped at the house on her way to work, and we got to talk about Kylie a bit. Kylie's been over to see Steve. She was excited the other day that she could read his lips when he told her "I love you." She tells him that she loves him and sometimes she rubs his arm. Last night she was a little intimated by the boys, but it sounds like, overall, she's doing great and happy to have her Steves back home.

7.21.08

Steve is doing fine, and as of a couple of hours ago, he was in his new chair which was assembled today. It still needs some tweaks, like new arm rests, but Steve was happy with it. As he maneuvered through the house, he asked Joe if he had left over paint for the walls. It may take a little while to adjust to the mid-wheel turns.

Overall, things have been crazy. In addition to the chair being put together today--Steve's new furniture arrived. It's this rugged, rustic wood furniture that he had picked out for his house. If I remember correctly, I believe this was a gift from Nana and Aunt Karen. It's really cool.

The search continues for a nurse. In the meantime, Kris and Ashley, April and tomorrow night, Steve Willett, have been helping out with the overnights. But MaryAnn and Joe still need to get up at various points throughout the night.

Steve also still needs a respiratory therapist. He has to get regular breathing treatments which have to be administered by a RT and so far, they haven't found one.

Sunday was not a good day for Steve, at least the early part of the day. He had some pain and a fever--he was just so uncomfortable. Thankfully, he slept really well last night and was feeling better today.

I apologize for the lag in my posts--I was on LI getting my mom online today. I made this blog her homepage as she requested and she started to cry with excitement.

Please show her what an amazing family of hope you have been for Steve and send your love his way. Oh and don't forget to pray for a nurse, a respitory therapist and some much, much needed rest for MaryAnn and Joe. Thanks everyone!

7.19.08

Steve was feeling better as of a little while ago when I talked to Mare. He was having serious pain earlier today, but he's more comfortable now. Thank you to John Rice for loaning Steve your manual wheelchair, which has allowed him to move about his living space. I had the pleasure of meeting John and his wife Becky in the hospital in Huntsville. John had been to Shepherd after his own spinal cord injury. He had heard about Steven through Becky Hubert and his visit to the hospital was so reassuring and informative. I know that he's since been in touch and offering advice to Joe along the way. Anyway, thank you John.

Steve was able to sit in front of his massive new TV with lot of friends yesterday. Apparently, they have named the space, "The Man Cave." He was spent after the long day socializing and he slept the whole night.

Unfortunately, the nurse service that was supposed to come yesterday backed out. Hopefully, something will come through soon. Both day and night shifts are really tough on MaryAnn and Joe.

7.18.08

As of last night around 10 PM, Steve was feeling good. He had friends visiting throughout the day, the support is wonderful. The family doctor came by yesterday and said that he would be willing to make house calls, run tests as needed, etc. That provided a tremendous peace of mind. Today, a prospective nursing agency is due to come by the house, so we're really hopeful that they will be a solid fit. in the meanwhile, MaryAnn and Joe continue to be extremely grateful for Donald's guidance.

Unfortunately, the loaner chair that they were given is too narrow for Steven, so he remains unable to get around the house. Hopefully his chair will get to them quickly.

I'll try and get some new photos up soon. Ohhhh KKKKrrrrrriiiissss? Can you help a sista out? Or, an aunt as the case may be? xo

1st day home

Yesterday was hectic with unloading and unpacking everything. Steve had a lot of visitors too.

The ambulance was very warm--so Steve was uncomfortable for the ride. He had a fever of 101 last night and this morning his temp is still slightly elevated. Joe's cousin Donald, who is a doctor, is going to be with them for a few days, helping them go over things. MaryAnn and Joe are still trying to find a nurse which is vital since Steve needs around-the-clock attention.

Steve's chair hasn't arrived yet, so he isn't be able to see the rest of his living space, including the deluxe, flat screen TV that Kris got him. That's probably okay. One day at a time. The move was a massive change and so some bed rest might be just perfect for right now.

Steve's on his way home...

After 105 days, Steven and MaryAnn have left the Center. As of 11:15 eastern time, MaryAnn was 40 miles from Chattanooga, and then they have another hour and a half from there. April drove over to Atlanta with Joe and Steve Willet last night. Steven was totally surprised! So April is driving back in the truck with MaryAnn and Joe is in the ambulance cab (he's not allowed to ride in back--it's a liability.)

If I were a better techie, I would post the photo of Steve's empty room at the Center that April had texted to me. It made me cry. It's overwhelming.

I just talked to Kris who was up and at the house at 6:30 this morning. He was setting things up, mopping the floor, going to the supermarket, getting Steve another TV, taking Skippy for a bath, getting a haircut himself, etc, etc. He said that the crew essentially built another house in three weeks. It's about 1,600 square feet. I am sure, detailed photos will follow.

I told MaryAnn that I wouldn't call tonight (I had also told her that I wouldn't call today-but I couldn't help myself, I just needed to know that she was on the road). But this time I mean it. Tonight is their night to settle back in at home as a family. A family who I know have inspired us all.

One more day...

Due to logistical matters that I'm not going to get into, MaryAnn and Steve will be leaving the Shepherd Center on Wednesday morning instead of today. They were both pretty bummed, but I'm sure seeing the large number of comments from you guys yesterday will be just the pick-me-up they need, thanks guys!

I hear the house is amazing--I can't wait to see it. Thanks again to everyone who worked endlessly to pull it all together. It's incredible.

As of this morning, Steve felt pretty good. I know he is so excited to see all his pals again. Joe and Steve Willett will be driving over to Altanta later this afternoon. Joe will ride in the ambulance tomorrow and MaryAnn will follow in her truck. I know I've said this before, but really, it's not long now!

7.14.08

Steve slept most of yesterday--he was not feeling good. Today is going to be a hectic day for MaryAnn as she tries to make sure they have everything needed for home.

MaryAnn would like to thank the principal and teachers from her school for their ongoing support and prayers. They have organized preparing meals for eight consecutive nights once MaryAnn returns home. This generosity of heart and time has helped the family, and especially MaryAnn, greatly. Thank you.

A while ago someone asked whether I would be continuing this blog once Steven is home. And all I can say is as long as you keep reading, I'll keep writing. Once Steve and MaryAnn are settled in, we will figure out what kind of frequency makes the most sense.

The next 48 hours are going to be a time of intense emotion and transition. Please pray for peace for MaryAnn, Joe and Steven as they make their way home.

7.12.08

Just one more day...Steve's return date home has now been moved to Tuesday. That's because a pulmonologist in Huntsville insisted that there is no way that Steve should return home without having a second, backup vent. He has one, but he needs another in case of emergency. The additional day will allow time for them to acquire the second vent.

On an extremely uplifting note, I want to share a story about a little girl named Kelsey, the daughter of MaryAnn and Joe's friends from Birmingham. Kelsey had been following Steve's progress and told her mom that she wanted to sell lemonade on the 4th of July to raise money for Steve. So Kelsey and her little brother Chance sat at their stand from early in the morning until late afternoon, and raised over $500 pedaling lemonade! People were dropping off checks until the very last minute. Steve and his family are so grateful to you Kelsey and Chance! And the rest of us are so inspired by your efforts.

Steve continues to deal with a lot of discomfort. There is tingling in his hands and legs. I don't know the exact reason for this, but I believe it's due to nerve ending still responding to the injury, it doesn't mean that he's regaining feeling. I don't want to give anyone false hope. Although of course, we maintain massive hope every single second of the day. Yesterday, when Steve's physical therapist did a check to see if he felt pressure when she applied it to different parts of his body--he responded at one point saying something like, oh, that's sharp! She got excited and said, you felt that? He replied no, I'm just kidding. We are blown away by Steve's sense of humor.

Let's all pray that his day today is painfree.

7.11.08

MaryAnn stayed overnight on Wednesday night to make sure that the portable ventilator that they will be taking home was working well. And while the vent was fine, Steve didn't feel good. He has pain in his legs--and his spasms only increase the discomfort. It sucks. On Wednesday he did two miles on the bike, and this kind of movement is supposed to help with the spasms. Unfortunately, that wasn't the case for Steve. Yesterday was just a really uncomfortable day too.

April is coming to spend Steve's last weekend at the center with him. Hopefully, he's feeling better today. Let's send our collective prayers and wishes toward that thought.

7.9.08

I just got to tell Steve over the phone all about my birthday shenanigans yesterday--bottomline avoid the gelatinous pork when in Chinatown. We had to wrap up the call because Alison, the recreational therapist was coming in for some time with Steve. He was in his chair and ready to go. Aunt Karen was able to help MaryAnn get him out of bed today. They got him up without help from any nurses, which is good practice for when they are at home.

Steve had some of his favorite people for the center at his graduation yesterday--Carol and Briana (his old physical therapists), Mike (his ICU nurse), Erica (one of the charge nurses on his floor now), and Lex. MaryAnn said it was really nice. Only five more days now until Steve's home!

7.8.08

Steve was rightfully upset yesterday morning because his call button was not put on him by a member of the staff, and so he had no way to contact the nurses station to let them know he needed his mouth suctioned. His call button is on a headband that allows him to be able to call the nurse by raising his eyebrow. It needs to be on him anytime that he is in the room alone.

A little longer and he'll be home. Steve's now going home on Monday, July 14, in order to allow a little more time for the house to be ready. So although not tomorrow, less than a week!

Today is Steve's graduation ceremony at Shepherd. They have a little ceremony in the gym for all patients before they leave the center. Steve's ceremony is at 2 PM today. Hopefully, some of his old nurses from ICU will be able to make it and maybe Lex too. Whoo HOOOO--Steve, you're almost home! Congrats on the graduation! Go on and soak up all the Lex-isms that you can before you go, it's not long now. I hope the next bunch of days FLY by. Love you! Have a great day!

7.6.08

Steve had a good weekend. He was able to watch the fireworks with April, MaryAnn, Aunt Karen and Nana. It was long day for Steve; he was in the chair for about 12 hours. He didn't get back to his room until after 10. His Saturday was solid too. April spent the weekend nights with him.

Steve's chair was delivered to his house. They will now be able to use it to equip the van with the necessary locks, so he will be all set once he's home.

Thanks for checking back on Steve's progress. He's been having a good spell. Please leave him tons of comments for the new week. Let him know what you were up to this weekend. Thanks everyone!

7.4.08

Steve's temp is a little low right now, so they have a pile of blankets on him, a few fresh from the dryer so hopefully, that will warm him right up. April just arrived, so we know that she will at least have him smiling. Amanda, your post about some fireworks shenanigans had him laughing as he was trying to explain what had happened. MaryAnn said he was laughing quite a bit about it, so thanks for that!

They are all still supposed to go to the seventh floor to watch the fireworks tonight. And Lex said that he was going to come back to watch with Steve, which would be really cool.

The search continues for a nurse, so please keep your ears open if you know of anyone who might be a good fit. Thanks.

OK, here's hoping that Steve's temp returns to normal and he has a good rest of the holiday. Lots of love to you today Steve!

We're all thinking about you and hoping you have a good night. xoxo

7.3.08

Steve had another good day today. His increase in spasms continue to be a discomfort, but other than that, no major complaints. We are so thankful for this. MaryAnn was trying to get access to the atrium on the seventh floor tomorrow night so that they could watch fireworks together. I bet Atlanta does a pretty solid show...Happy 4th Everyone!

7.2.08

Steve had another pretty good day today. Just think, this time next week he'll be home! I can't help but think about how much Lex is going to miss Steve! And of course the nurses there. Two nurses have offered to use their vacation time to come to Alabama and help MaryAnn, which is so kind and generous and phenomenal.

OK, here's hoping that Steve sleeps well and has another good day tomorrow.

7.1.08

Steve will be leaving the Shepherd Center on July 9th, next Wednesday. Thankfully, this allows a little more time for the house.
Not long now and Steve will be home sweet home.

MaryAnn and Steve picked out a van today. It's the same color blue that Joe's Dad's plumbing truck was, so we're all taking that as a good omen. It will be at their house when they arrive home.

Steve was in the chair about nine hours today. He was feeling good today and he had a smooth night last night.

Courtney placed the final order for T-shirts today. Thanks to everyone for your contributions and making the Steve-O shirts the IN thing to be wearing. Courtney still has some shirts from the second order which need to be picked up. Once again Courtney's contact info is cjlburrough20@gmail.com or 256-828-9325 or 256-755-7585. Thank you Courtney!

**Please note, Joe and MaryAnn are looking for a home healthcare nurse or a private duty nurse. If you know of anyone who might be a great fit for them, please email Joe at Stevecj5@mchsi.com. Joe is currently having discussions with agencies, but any additional recommendations would be greatly appreciated.

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.