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Blog Spot Still reaching for the sky. Posted Sep 4, 2010 2:44pm Fall is here and we are going to attempt to reproduce our very first fundraiser, the hugely successful garage sale by our neighbors on Buckeye Court. Saturday September 18th at 6am, bright and early. Come by for a cup of coffee and to visit with friends. We can use any help we can get and will be accepting donations of items to sell all day Friday the 17th. Tom’s update: We call it our science project. We continue to try to decrease his medication and he pushes himself a little more every day for strength and endurance. He can now make it about 40 feet walking down the hall at physical therapy and two miles on the recumbent stepper is the standard workout. Our evening routine has not changed for almost three years. When Tom was injured I was taught that not only did he need to be turned side to side to stave off the dreaded bed sores, but I witnessed firsthand that his skin wouldn’t tolerate so much as wrinkle in the sheets under his body. Pulling the sheets tight on his rotating air mattress was always the last thing before we went to sleep. Last month we jumped way out of the box and went up to a mountain cabin in Shaver Lake. Tom and Cheryl’s wedding was an event neither of us wanted to miss. This is only the second time we have spent the night away from home and the first time I didn’t have professional help. Todd helped with Tom’s physical therapy and the first night away Alex and I plopped Tom down on a regular bed. I said a little prayer for his skin and hopped his continued exercise program had increased his circulation enough that I would not be awakened by violent spasms indicating something was wrong. A restful night came and went, whew. Now we wonder how many things we aren’t doing because of a prognoses given nearly three years ago. Who knows what is next with our little science project here….still reaching for the sky!
Thank you for attending... Posted Jul 10, 2010 4:33pm Thank you all who attended Tom’s fundraiser in the park. It was a huge success again this year. We raised an astounding $12,000. This will completely pay for Tom’s Exercise Physiologist for another year and will help with some of our Home Health Nursing. We could never have done it without our family our neighbors and this wonderful community that came and helped us serve 1500 lunches! Our next fundraising event will be a yard sale in September so keep us in mind when you clean out the garage. Tom continues to improve and reach new goals almost daily in his workout regimen. He get to swim weekly and now walks the hall once a week at Northridge Hospital with his Physical Therapist’s Debbie and Joan. You can see it on his web page, it’s the latest video on the video link. He is making it over to the gym three times a week to get on that recumbent walker and to see Taylor Isaacs (current milestone: a 16 minute mile!) Our present goal is to continue strengthening his shoulders so he can help support his body weight while learning to walk again. Tom’s Birthday is July 14th. We will be enjoying happy hour on the patio at Kabuki in Valencia and would love for you to join us to celebrate. Have a wonderful and safe summer.
...And he walks! Posted May 13, 2010 8:09pm There are many situations in life where we respect and celebrate those who think the rules don’t apply to them. Thank goodness that my parents taught me that it was not only our privilege but also our obligation to question authority. When the social worker at Kern County Medical Center told me that Tom was going to a nursing home in West Covina, I knew the instant that the words came out of her mouth that it would only happen over my dead body. My husband, thank goodness, never thinks the rules that other people make apply to him. He always moved through life doing whatever it was that he felt needed to be done and the amount of work involved was of little or no importance. The rules given to him that same day at Kern were: Ventilator-dependant, brain damaged, tube-fed, paralyzed vocal chords, blind in one eye, loss of hearing, paralyzed with no possibility of feeling or moving anything from the shoulders down. Now if someone had told me that Tom would be walking again someday I may not have jumped so fast to agree, but…BUT… Tom makes his own rules and the amount of work involved was inconsequential. My friends on face book already know that Monday May 10th Tom took about 14 steps with a walker in the Physical Therapy department at Northridge Hospital. It was not without assistance but it was walking non-the-less and I have no doubt that he will one day no longer be classified as a C-4 quad; paralyzed from the nipple line down, but will have his own classification of “walking quad” and will be a celebrated rule breaker! Come stand with Tom and party in the park on May 29th for our third annual “Barbecue in the Park” fundraiser. This year we have turned over the stage to the Santa Clarita Valley Blues Society for their first ever Blues Festival! They have an incredible line up of seven bands. Google “Laurie Morvan” and she will knock your sox off. Car show, Kid zone, vendors, auctions, and our famous Mountainview Chili Dogs and Sausages! Please give us a call for vendor information or volunteer opportunities! The flyer can be found at Tomsrecovery.com. A Quantum Leap!Posted March 25, 2010 I know what it takes and I don’t know how he does it every single day. Just this weekend someone said to me that when you are given an obstacle that cannot be overcome, that is when something more is delivered. I think Tom has had quite a delivery! Things are moving here. Arms, legs, weights, pedals, and now wheels. Thanks to the Santa Clarita Velo and Steve Prichett, Tom actually went for a spin on a recumbent tandem bicycle last weekend. I was so nervous as Tom was lowered onto the bike and clipped in to the pedals. If we failed it would have been a huge blow psychologically, and if he went down it would be a catastrophe for his body. I held my breath as Danny and his friend AJ jogged along side until we were sure he would stay seated upright. Tom shouted out that it was a quantum leap in his recovery as he flew past me with the wind in his face once again. Of course I was full of tears remembering when Tom ran beside Danny on his first bike ride. What a turn. Photos at tomsrecovery.com The really good news is that Tom will be at the Santa Clarita Century ride April 3rd with his friend Steve. Starting at the Valencia Town Center , Tom won’t quite be ready for the century, but will participate in the 6 mile family ride starting at 10:30 near the new Lazy Dog Café. Please come help us send him off on the starting line with a celebration for his return to the cycling world! Info: http://santaclaritacentury.com/ Also in the near future, plans for another outdoor concert and barbecue/fundraiser to support Tom’s care and on going therapy with Exercise Physiologist Taylor Isaacs. Please mark your calendar May 29th from 11-5 PM. We already have confirmation from Schreiners Fine Sausages, Lauren’s Show and Shine Car Show, Fire in Motion fire truck rides, and Dr. Ron Singer driving KHTS fire truck. Local bands, exhibitions, vendors, kid zone, something for the whole family. Thank you Castex of Hollywood and Creative Sound solutions for helping us bring it all together. Please let us know if you have something you would like to donate for our silent auction. Flyer: http://tomsrecovery.com/TomsBBQ3rdAnnual1.pdf
Celebrate Life! May 29, 2010Posted Feb 28, 2010 We are well into our third year and we have new milestones in recovery: Progress doesn’t come without hard work and Tom has a daily routine that keeps him training like an Olympic athlete. Take a look at how strong this quadriplegic is becoming at tomsrecovery.com. You can see a new 1 minute video of him working on the T-5 with Taylor Isaacs in the Northridge Gym. If we believed everything that everyone told us in the beginning, Tom would have been sent to a nursing home. To not have had the hope of recovery would have been the death of him and the doctor’s predictions of his deterioration and demise would have been fulfilled. But here we are and we are going to celebrate it again! Tom and Carlos attended the Home Owners Association meeting on Tuesday last week and received the blessing of the board members for Tom’s 3rd annual Barbeque/Concert in the Park to benefit Tom’s Special Needs Trust. Mention was made about how well the event ran last year, how many people enjoyed the day, and how clean we left the premises when the day was done. We have a few additions to our lineup of sponsors and entertainment to keep it fun for all ages. Save the date: May 29th, 2010! If you are interested in helping on the day of the event, if you want to be a vendor, or can help us with a donation for silent auction, leave us a note or contact us via Tom’s web page at tomsrecovery.com. We re looking forward to seeing everyone!
December Blog Posted December 27, 2009 When I look back on my calendar I wonder how I made it these past two months without posting and dragging all of you down this road with me. The only explanation I can come up with is that things must be getting better. Tom is increasing his strength and endurance as we have all expected. He has successfully avoided the swine flu for now and can continuously pedal the recumbent bicycle for 3 minutes. We had a great day November 8th at the Santa Clarita Marathon. Tom stood up and swung a leg over the finish line. He was feeling the energy from the crowd and felt so strong that Taylor had him up twice at the line, then once again in the sun for a group photo. He also had a night out with the guys and attended the Kiss concert at the Staples Center. They sat in a suite right across from the stage next to the Foo Fighters and Luc Robitaille of the Kings. We especially appreciated the holidays this year. Paramount are the times we spend with family. We listen more intently to comments on the weather, or the flavor of the turkey this year. It’s always compared to the home grown prize that my brother gave us, was it in 2004 or longer ago? We absolutely live IN the moment. There should be a word for that because it’s difficult to explain. The unconscious thought patterns have been silenced completely and we tolerate more the jarring of a room full of very large and very happy teenage boys. A little too loud, even obnoxious at times, forever hungry, usually sweaty or in need of a shave, we strain to hear their plans, goals, hopes and dreams. We are keenly aware of the importance of our job here and dare not waste any opportunity to guide them toward self sufficiency. We pray that they achieve their goals honorably…preferably with a wife and many granddaughters. I believe they have learned lessons far beyond their years and will undoubtedly be a support to family and community more times than not. They know that our bodies will all someday parish, and we don’t get to choose when. Their father has taught them that in life you must always try your best, no matter what the circumstances are, no matter how long the road. It’s the best thing to do, it’s the right thing to do and it’s what makes each of our lives exceptional. We are blessed.
A bead of sweat! Posted Nov 6, 2009 6:09pm Posted 5 hours ago Milestone passed: The first bead of sweat! After a bout of pedaling on the recumbent bicycle Tom looked up to see if the ceiling was leaking. He was extremely excited to feel a cool breeze cross his forehead and realize that he actually produced a bead of sweat. This will require some research as this is something quads generally are not able to do. Tom is so amazingly strong and healthy you wouldn’t recognize him. Even in the past few weeks he has regained new abilities in his legs. Muscles are working that have not for almost two years and while not weight bearing he is able to “will” his legs and feet to dance the floor, toes in toes out, step side to side. His voice has been known to reach 100% velocity when properly motivated, usually by his sons, and this time at the SCV marathon he WILL actually be able to take a step over the line. Aided by Exercise Physiologist Taylor Isaacs and Nurse Tom, he just yesterday stood, shifted his weight left and swung his right leg out in front of the other. Unbelievable. If you are going to be at the marathon, please try to meet us at the finish line at 8:15 to cheer him on. Electrical stim is working twice daily on his hands and we see improvement! Don't know how we squeeze more in to our day.
October Update Posted Oct 13, 2009 10:47am October update: We have just purchased an electrical stimulation unit to increase the strength in Tom’s hands. His occupational therapist wants it on him for an hour every day. I think this means he will have to wear it in the van when we are en route to PT because the guy doesn’t have a free hour in his day. Take a look and the new photos and see how straight he can sit and stand. Whether its 15 minutes daily or an hour on the weekends, we all struggle to get our exercise in. We should do it, because we CAN do it. This man exercises at least 4 hours a day every day religiously! More if he can get it in. Tom says there could be worse things than having to exercise everyday for the rest of your life. Just like the first time I met him… I still don’t think anyone is as strong as Tom. On the calendar: November 8th Tom will be participating in the Santa Clarita Marathon. He is scheduled to be at the finish line (also his starting line) from 8:00 to 8:15 AM to stand and take a step. Like a line in the sand, a symbolic barrier put up by many specialized doctors at three prominent hospitals, insurance companies, and naysayers along the way. D E N I E D by Tom. Exercise physiologist Taylor Isaacs will be on hand to help Tom…and maybe we could get his physical Therapist from Northridge Hospital to attend and have a first ever meeting of the two great forces in Tom’s recovery.
An Amazing Weekend! Posted May 27, 2009 12:29pm What an awesome weekend! Tom’s event in the park was more successful this year in so many ways. We had more people, more hotdogs, more music, better weather, and it ran without a hitch. As a result of everyone’s hard work, our friends and neighbors were able to contribute over $13,000 to the Tom Bolewski Special Needs Trust. We are also very happy that the local members of “Team Rise Above” attended with CORE. I keep introducing Taylor Isaacs as ‘Tom’s Trainer’ and I wonder if that irks him. It’s not out of disrespect, the man has so many titles I don’t know which one to choose. I know he is a Exercise Physiologist, former Professor of Kinesiology at CSUN, and was named ACE World Trainer of the year twice for his work with Aaron Bakers (aaronbakers.com). How lucky are we that he sees clients right here at Northridge Golds Gym?…soon at the first ever world class C.O.R.E. facility in Glendale California. Along with the new website, photos of the day’s event will be posted soon at tomsrecovery.com. The Los Angeles Marathon There are no words. When Artist Anthony Hansen (anthonyhansen.com) who had never met Tom, was told he had donated enough his response was “How much would you give to help someone walk again?” It was an honor to be with this group of athletes who have overcome so much and continue to push on and recover. We met so many inspiring people and are looking forward to new friendships. A picture tells a thousand words. One small step for man, one giant leap for Tom Bolewski…and C.O.R.E. Just when you think it’s time to rest…Tonight we will be in Hollywood cheering on our new friend Jay Cramer (comedian and member of Team Rise Above) who from his wheelchair is a finalist in “LA’S Funniest Comic” 8pm @ THE IMPROV - 8162 Melrose. Thursday night Danny graduates from Valencia High School and Friday Christopher turns 21 years old. Saturday we will be in Anaheim at the Abilities Expo and then to Palmdale for Timmy’s graduation celebration. Whew, we will rest in June!
GAME ON! Posted May 21, 2009 12:52pm Tom has been working hard to achieve “THE STEP” that is to take place at the Los Angeles Marathon on Memorial Day. I can see how setting a goal really helps him push to meet the challenge. If all goes as planned, the boys will help him stand at the park event on Sunday, May 24th. We are reminded daily how many little things affect Tom and work diligently to find the “Proper Protocol” (thank you Taylor Isaacs) for his best performance. As of now the proper protocol starts with 10 hours of sleep which may be hard to achieve with event organizers in motion and problems with his rotating mattress. He will also need to be sequestered for an hour before he stands so he can get “warmed up” as to decrease spasticity which pulls him back down into his chair. Still not afraid, onward we go. Thank you Laurie Liggera for a successful event and by far the most beautiful one to date. Laurie created a day in her garden filled with beautiful flowers, fine china teacups, lace & ribbons, and lemonade. Friendships old and new were served a picture perfect lunch on vintage glass plates of different colors followed by an unbelievable display of sweets produced by my friend Toni Williams. The donated art and music made the day magical. Thank you from the bottom of my heart to Laurie and her entire extended family. To those of you who will be joining us for Sunday’s event we ask that neighbors who are able to please leave their vehicles at home as parking will be limited. We would love to have special parking for our early arrivers who will be helping us but we have lost many of the parking spaces on Seco and know that this will add to the problem. We personally will be taking our cars to Mountainview Elementary School up Cypress and ask that anyone coming to spend the entire day do the same if possible. Any ideas for a shuttle are welcome as this will be an ongoing problem throughout the day. (Who out there knows Dr. Singer and his open air fire truck he drives around here at Christmas time???) We have an incredible event planned. More for the kids to do, more talent, more gift items donated for raffle and silent auctions, more vendors. We have always known that we have an exceptional family but It’s a true honor to have friends and neighbors that are so committed to helping us keep Tom at home during his recovery and with the best care. Tom can now be found on twitter at “tomsrecovery”; on face book at “Tom Bolewski” (he says he will begin to post in June), at tomsrecovery.com, and here on care pages!
An Indomitable Spirit Posted Apr 30, 2009 1:04pm Tom says “it’s just another mountain” and then we lean forward and go. He works very hard every single day just to keep from regressing and the fact that he puts enough effort into life to achieve improvement, keeps me fighting too. He can stand…on dry land. I’ve seen it. He is also working on using his hands daily and has been known to actually pick up items he wants and get them to his lap. This is a huge milestone for us but has proven hazardous in the produce department at the market. Tom’s days are full. I give Tom breakfast in bed every morning, if I’m at work, the kids do it. He gets an hour of “range of motion” in bed and then it takes a nurse two more hours to get him up and ready for his day. By the time he is up it’s time for lunch, which he doesn’t eat because for all his effort the total amount of exercise is minimal and he is trying to keep his weight down so it’s easier on those of us who have to move him. A light snack and medications and it’s off to the San Fernando Valley for physical therapy. Tom spends one day in the pool at Northridge Hospital, one day on land pedaling a cycle or standing between the parallel bars, one day receives deep tissue massage by Mr Taylor Isaacs to break lose the adhesions in his shoulders, and one day on the T-5 recumbent exercise machine at Gold’s Gym in Northridge. Back home in the afternoon he does breathing exercises for 30 minutes every day, sits in a regular chair for a couple of hours, spends about an hour up and down in the standing frame, and tries to spend a bit of time at his desk or kitchen table reading. At the end of the day it takes about 45 minutes to get him in bed and we are both exhausted. So we have acquired the need for assistance for Tom’s every waking hour, and I say he is worth every bit of it. Why is he deserving? Because he puts in the work. He does the time. He never gives up. This is how he lived before the accident, and this is how he lives now, and that’s why this works, and that’s why I’m here. Event Updates: Ladies if you are looking for something to do on Saturday May 9th with your daughters or with your mothers, please consider joining us for lunch and tea to benefit Tom’s Special Needs Trust. A garden party hosted by Laurie Liggera featuring music and art and celebrating friendship. You can find more information at TomsRecovery.com or email us for information at Bolewski@sbcglobal.net. Everything is coming together for our free Concert in the Park. The Schreiner's have generously donated our hot dogs and Castex Rentals (a Zebresky family business) is once again taking care of our rental equipment. We are prepared for a great event this year including local bands, a car show, and a book signing by Joel Silverman, animal trainer and host of Good Dog U on Animal Planet for ten years. Please shoot us an email if you are available to help us host this event...or if you have teenagers that can come lend a hand. We have a fantastic new web page being built for tomsrecovery.com so that I can easily post photos and video clips of his progress. We have come a long way from being told he would never move or breathe on his own. Thank you to everyone who helps to keep us up and running including our children, our family, our friends and our incredible neighbors here in the Mountainview Community!
It's May Posted Apr 5, 2009 1:28pm Last month we passed another milestone. Tom and I took a road trip out to Bakersfield to visit the trauma unit where he was first treated. Three of his nurses were there and we all cried and hugged. Lisa and Courtney couldn’t believe how good he looked. My memories are fading (what else is new) and names escape me, but my body remembered every detail. The sounds, the smell, the fear, all the love and strength around us those first six weeks. It was very healing for both Tom and I to return victorious. We couldn’t have made the trip without another destination, thank you Robin and Pete for giving us a place nearby to retreat, like I did so many times in January of ’08. From the Kenya Olympic Marathon Team: The harder things get, the easier they must become. Things are simplified greatly around here because of the difficulties we face. Life has become so simple, that you can easily see miracles happening all around Tom. I’m not sure how many have occurred, but I’m going to start keeping track and believe me, the friends and family we have that help keep us propped up are on top. Important dates coming up: May 9th “A Celebration of Friendship” Garden Tea Party May 24th “Concert & Barbecue in the Park” May 25th The Los Angeles Marathon May 3rd For those of you who don’t have enough fundraisers on your calendar for May, Tom is on the Board of Directors for C.O.R.E., Center Of Rehabilitative Exercise, and attempting to fill a few tables at their one and only annual fundraiser at the Agua Dulce Vineyard. Our entire family will be there to enjoy this entertaining afternoon. Please let us know if you are interested in attending. Scheduled: Comedian Jay Cramer and the band CityZen.
Onward! Posted Mar 17, 2009 9:05am We are well into our 2nd year of recovery and what keeps coming to mind is that while planning our concert in the park last year, we were keeping the option open for a memorial rather than a celebration of life. I am very happy to report that the wheels are in motion again for another concert event. With grateful hearts we thank everyone who helps us continue the care and therapy Tom needs. All said and done, Blue Shield covered Tom’s medical expenses far beyond our expectations. Nearly $1,350,000.00 billed for his first year and we are left with a balance of only 2% due. Post injury is another story as Tom is now pushing the expectations of the medical community and the insurance companies. Tom requires 2 hours of physical therapy per day, breathing exercises, occupational therapy, and he travels to the valley for PT four days a week. Nurses are staffed a minimum of 3 hours per day, and 8 hours three days a week so I can work. Sounds like a mountain, I guess it is...but it's our mountain and we are going to climb it...straight up.
Stay tuned, there is no stopping him now!
Game On! Posted Feb 20, 2009 9:29am Tom’s trainer thinks he will be ready for the LA Marathon. "Team Rise Above" is an officially recognized event at the LA Marathon. It began in 2005 when Tom’s trainer, Taylor Isaacs, challenged Mark Richards to beat the odds given him and show the world that being physically disabled cannot keep some people down. The group has grown since then and this year they expect 30 people to amble over the finish line who were at one time given no hope of walking. They start at noon, moving as a pack all wearing their Team Rise Above tee shirts. Some walk further than others, all walking as far as they can…some only a step or two. Man, sometimes I think this world was prepared just for Tom. Would that be cool for him to take his first step over the line? Well remember it’s Tom, so you can bet on it. Monday May 25, 2009 Team Bolewski will take a walk with Team Rise Above! At this time I am trying to get Tom a standing frame that will help him practice standing up at home. Repetitive motion, with the correct physical dynamics will help build the neuro-pathways he needs to gain these functions. Taylor’s work outs have increased Tom’s strength so much that his work out on the T-5 Nu-Step (recumbent cross trainer) is up to a total of 6 minutes. His arms are so strong now that ne no longer needs the tape that held held the joint together for the past year.
Just when you think you understand how to post Posted Jan 19, 2009 8:31am 2nd attempt to post the video clip (or maybe you can cut and paste in your address bar), if you cant see it here...it's on my facebook page. http://s73.photobucket.com/albums/i226/scvkim/?action=view¤t=52ab5458.pbr][IMG]http://i73.photobucket.com/albums/i226/scvkim/th_52ab5458.jpg[/IMG][/URL] http://s73.photobucket.com/albums/i226/scvkim/?action=view¤t=52ab5458.pbr I was with him and I still watch it over and over because it’s hard to believe. I’m so glad I have this to share with you.
Look what a year can bring! Posted Jan 16, 2009 9:56am Huge milestones! Tom said it was amazing to feel his shoulders come up out of the water as he STOOD UP in 3 ½ feet of water at physical therapy. It takes all of his strength and concentration but itʼs really something to see. Besides moving furniture around the house he can now raise his arms up enough to turn off and on the light switches. Taylor Isaacs put him on the NuStep yesterday (a recumbent cross trainer) for the first time, something Tom has been looking forward to. It took everything he had to go five minutes but you know Tom, he has already set goals for doing 10 minutes by next month. As the anniversary of Tom's accident nears, my mind spins. The events, the people, the milestones, the setbacks, the education. The fundraisers, the gifts, the dinners, the cards and letters, friendships and the partnerships, The New Beginning. Thank you for praying with me, learning with me, staying with me through an unbelievable year. To celebrate life one more time we will be rolling down to LaCocina at Seco and Copperhill on Tuesday January 20th and hope our friends will stop by for a toast, or a hug and a smile and we can marvel once more on how good life can be and the greatness all around us. Anything is possible, act accordingly!
A New Year! Posted Jan 1, 2009 12:25pm Happy New Year! We are so happy it’s a new year. I’m enjoying the holidays a little more this year because of the feeling it gives me that near and far, we are all connected. (I also get that feeling on facebook, next stop…myspace and a page for Tom) What a wonderful world and group of people. Tom sure snapped back fast from our Christmas Day episode. Seizures are something we have no experience with. We appreciate those of you who called and stopped by with guidance the following few days. We have fabulous neighbors. Once again dinners showed up at our door, phone calls and visits bringing us guidance and support, and last night…champagne before everyone left for their evening celebrations. We actually made it out to a New Years Eve party. Ah, the last event of 2008 that I was skeptical of our ability to attend. Tom slept 16-18 hours for four days but had a full workout with Taylor Isaacs at Golds Gym in Northridge on Tuesday. This was followed by 40 minutes on the stationary bike with Debbie at physical therapy. He actually said the words to me (I knew they were coming) “I want to live at the gym”. So, as many times as I have made that New Year’s resolution, this year it has Tom’s will behind it pushing it forward. All of Tom’s energy will be going toward recovery so all of my energy will be going toward getting him everything he needs, and getting him all the help he needs to achieve. What do we have planned this year? We are going to get the front yard done so that Scott doesn’t have to keep mowing down our little lawn of self seeded crabgrass. Since the staffing agency can’t seem to find nurses to staff us, we will be interviewing LVN’s this year (This January, this week). We will be posting his appointment times somewhere so friends and family can see when Tom needs a driver. We are hoping to have another poker tournament this year so that Tom can keep up his training sessions with Taylor twice a week, and possibly a golf tournament so we can keep nurse Wilson on to help Tom with his morning routine. Because there is no gym available for Tom, we will be committing our efforts to assist Aaron Bakers and Laquita with their goals of opening CORE facilities. I’ve posted their mission statement and if you have a minute to read it you will know why we have hitched our wagon to their cause. Mission Statement: AaronBakers.com
***The First Year*** Posted Jan 22, 2008 11:58pm We are starting this web page so that we have a central location for communication regarding Tom's injury and progress. This page will allow for condition updates to be posted by Kim and others. It will also give you a place to send your well wishes and any other messages you want to send to the family. This site is new to us - so it will be a work in progress. Now the update: Tom is currently at Kern Medical Center in Bakersfield. He is in ICU with a spinal cord injury. The extent of the injury is still unknown. They do know he fractured his T4 vertebrae. He is regaining movement in his arms. He is showing some reflex in his legs, but currently no feeling or movement. He had an MRI today and results will be available tomorrow. He has facial fractures and will need surgery to repair them in the next few days. He is alert and communicating. On behalf of Kim and her family we want to thank each of you for your kind wishes and thoughts. We know this will be a long haul and we probably call in those offers of help sometime in the future. Right now we are moving day by day. We all know Tom and recognize his strong will and determination to overcome obstacles. We all remain positive and understand nothing is definite. Until next update - thank-you!! Posted Jan 23, 2008 11:52am We have just received a call from Kim. The MRI results have come back and we have positive news. Kim and Tom have been told that the MRI shows no injury to the spinal chord. They are telling them that the paralysis should be temporary and may be as a result of swelling in the neck area. We do not know how soon this could occur, but the Dr.s now are looking at potential full recovery! We are cautiously optimistic. Tom still has the facial and eye injuries to cope with but will take it all one thing at a time. Kick those thoughts and prayers into high gear!!!! Posted Jan 23, 2008 11:21pm It looks like Tom will be having reconstructive surgery to repair the fractures of the facial bones. This is tentatively scheduled for Friday the 25th. This is going to be a lengthy surgery. Kim has been able to communicate with Tom by asking questions and watching his responses. Tom is alert and understands. Tom continues to be tough as we would all expect. Thank you all for your encouraging words, thoughts, and prayers. Keep them coming, there is strength in numbers!!!!!! Posted Jan 24, 2008 8:08pm I (Todd---Tom's brother in law) Visited with Tom and Kim today. They are both holding strong right now. Tom is most comfortable with Kim by his side, and she remains there as much as possible. Surgery still looks good for tomorrow. Tom was very sedated today. He did indicate to Kim that he feels hungry...imagine that!! There are no real changes otherwise today. It is difficult to measure progress with all the heavy medications he is on for pain etc. We are very day to day at this time, and we remain hopeful that with time we will have good news to report. Keep spreading the word!!!! Keep the message coming, and lets hit ‘em hard with prayers and good thoughts. Our family is very grateful for all the support. We have a great network of family and friends and together we are in for the long haul. Posted Jan 25, 2008 8:33am I (Kim) just logged on this evening for the first time and am so happy to see so many people who love and support Tom, the boys and I. Thanks to Carrie and Todd for getting this going, while my brain function was running a little low. The break in Tom's vertebra is at T-4 or T-7. The break is on the outside of the bone and doesn’t affect the spinal cord. It’s stable and doesn’t require any surgery. This break has nothing to do with his physical limitations. Further up, at C-3 and C-4 he has bruising and swelling, but no breaks and no other physical damage to the spinal cord. It’s not severed, it was not squished, no pressure from disc’s. This is all the news I needed to hear because if there was only a thread holding it together, Tom would will it to work. The muscles he is using in his arms are at C-6 and C-7 and the fact that he was breathing on his own when he came into the ER is a function below the affected area also. As the swelling goes down we look for improvements in his motor skills each day. The accident was Sunday. Monday and Tuesday we had improvements in the use of his arms and reflexes in his legs that the doctors had not expected. I told them not to expect the ordinary with this patient, ever. Wednesday and Thursday he was more sedated so we just let him rest. Now his facial fractures. His brow and jaw and teeth are all intact, but his cheeks and sinuses have taken quite a blow. He still is having trouble seeing with his right eye, however the optic nerve has not been severed and when they do the surgery they will be able to relieve the pressure around it. That’s all I needed to hear, Tom just needs the link so he can will it to work. His brain function is unbelievable. He remembers everything, he knows what day it is and he wants to know the weather. For someone who can’t talk, he asks a lot of questions. The plastic surgeon will start on his face today (Friday, 1/25) mid morning, and has estimated at least five hours in the operating room. Again - thank-you for all the love and support for Tom and my family. Kim Posted Jan 26, 2008 11:48am Tom went into surgery this morning at 8:00 to do reconstructive on his face. The surgery should last about 5 hours. Send those positive thoughts and prayers Tom's way. With all of Tom's strength and the love pouring in he is in good hands. We will update site after surgery. Posted Jan 26, 2008 9:43pm Tom came out of surgery this afternoon. Todd, Carrie, Tony and Jessica were at the Hospital this afternoon waiting. I was able to see Tom. He is back in ICU and is still heavily sedated. Tom's facial surgery is complete and the results of the work on his face are good. We are waiting for Tom to awaken post anesthesia. We should know more tomorrow. He is resting now and in good hands. I (Todd ) will be back first thing in the morning to see him. Please keep praying for a full recovery and thank you for the continued support for Tom, Kim and family. Posted Jan 27, 2008 11:23am We had a difficult night. Tom had not recovered from complications with anesthesia during his surgery. His brain seemed to have shut down. I was very saddened and a little skeptical when they told me it could possibly just “turn back on” and we had to wait. He was critical and the doctors were just waiting for his will to turn the situation around. Well, who here doesn’t know about Tom’s will. How could I have faltered for a second knowing they were depending on his will. This morning he is once again responding, answering questions and back on pain medicine and beginning to move his arms. This is one amazing man. Posted Jan 29, 2008 6:17pm Tom does have positive results showing up here, but I think he may need a little help. You know Tom, he would never ask. I’m going to do my best to lead all of his friends and family in a prayer. I don’t know if he would approve as he always said he belongs to the church of recreation (tithes generously, worships religiously). But I’m thinking today maybe we can pool some good energy and love to help him out. Let us say a prayer for Tom’s right eye. May the five plates placed around it protect it and continue to aid in his vision recovery. Let us say a prayer for Tom’s lungs. May he continue to fight the pneumonia that has settled in each side. Let us say a prayer for Tom’s kidneys. May they be strong enough to filter the toxins from the anesthesia complications and the dye used for x-rays and cat scans. Let us say a prayer for Tom’s back. May the bruising and swelling in him spinal column subside and prove to be undamaged. Let us say a prayer for Tom’s mind. May he have no lasting effects from the 106 fever. May he continue to hold all the wonderful memories from the past 25 years. Let us say a prayer for Tom’s heart. May he continue to be strong enough to keep a heart rate above 40. This seems to be a goal they think he can achieve. Let it be full at all times with love from his generous friends and family. We continue to have hope for recovery because of Tom’s incredible will and strength. Amen That was written yesterday and I didn’t want to post it until I talked to my kids. Today we have better news. The cat scans of his brain are clear, the pneumonia is slightly better today, and he is pissed off because he wants a shower. :o) Thanks and love, Kim Posted Jan 30, 2008 9:39pm I got kisses, smiles and smirks today. Tom is moving both arms, and he has vision in his right eye again! He amazes me! What a great day. Thank you thank you thank you for the prayers. Love hugs and kisses, Kim Posted Jan 31, 2008 10:21pm I had a great day with Tom. He is very happy he is getting physical therapy now…and I think my hours of sitting idle at his bed side are over. He wants out and he wants up, he wants the news from home. The pneumonia however proves to be very resistant so they have suspended attempts to remove him from the ventilator at this time. Tom’s mental state can only be described as determined, and he is fearless. As always, this is all I need, and why I love him so much. Posted Feb 1, 2008 9:48am This was taken 1/31/08 - great day! Please read next update for more info. Looking good Tom! Posted Feb 3, 2008 10:34pm Just got off the phone with Kim, and we discussed the fact that we have not updated in a couple of days. She came back home to take care of the boys and things on the home front, and will go back tomorrow. Tom was able to visit with Danny and Alex. He gets tired pretty quick so the visits are short. His biggest obstacle is the pneumonia. He is still trying to kick it out of his system. This requires breathing treatments and much rest. Once this is cleared up we hope for the progress to continue. Thank you for all the kind words, and please keep the prayers going. Thank you, Todd Posted Feb 5, 2008 9:34pm Tom continues to struggle with the pneumonia. The doctors are considering transferring him to an acute care facility with pulmonary specialists. The intensive care unit is really draining him with the 24 hour lights and action, beeping and poking. Everything else is stable, and this is the obstacle keeping him from moving toward recovery. He seems to have some more use of his arms today, but nobody wants him to over-exert himself. We still have complete faith in his will to get him through this difficult time. If anyone can…..Tom can! Thank you to all of my wonderful friends who have been feeding and driving my children all over the Santa Clarita Valley. It's very nice to know I don't have to worry about their care due to the multitude of mothers reaching out to them. Thank you to my friends at VPH for taking my calls at all hours. (to my friends who play cards in the basement at lunch...save my seat, I'll be back) Thank you Alene & Don for the personal long distance taxi service. Thank you to the Bako Plumb’s & Avery’s for keeping me safe & warm & fed. Thank you Carrie & Todd, Mom & Dad, Sue & Joe, Chris, Danny & Alex and Heather. We are a wonderful family surrounded by wonderful friends! Posted Feb 8, 2008 9:05am Tom took a few steps back with his health about four days ago, but it’s clear to me now that the only reason he has knocked on heaven’s door so many times these past weeks was to thank the Lord for all the attention, and to let him know that he wouldn’t be joining him any time soon. In the past 24 hours we have seen some improvement in Tom’s lungs. This is the sign the doctors were waiting for that tells them his will has once again helped him turn the corner. We are hopeful that we can get Tom healthy and stable so we can move him closer to home next week. Posted Feb 10, 2008 10:05pm Tom has continued to improve! The pneumonia is better and he is depending less on the ventilator again. His mouth has been unwired and this helps tremendously with communication. The words come slowly because they are still keeping him sedated. He is always asking about the boys, and food. Tiny improvements in his arms give us all hope. Tomorrow we meet with the team of doctors so maybe we will be given a care plan at that time. As soon as he is stable, we hope to get him moved closer to home. Thank you for all the cards and postings for Tom and our family. Posted Feb 11, 2008 11:34pm Halleluiah is all I can think to say. The doctors say “cautious optimism”. Other terms used for the first time today were “return of functions” and “decreased sedation”. How about “movement in lower extremities”, and 20 minutes breathing on his own, twice. Then I received a call from the Vice President of my insurance administrators who gave me his personal cell phone number and told me he was making arrangements to have Tom moved to Valley Presbyterian Hospital as soon as he was able. I try to hold myself together and I know that this day will be hard to top. I’m sure we have many battles ahead but today takes the cake as the best day in three weeks. Tomorrow is Danny’s 18th birthday so say Happy Birthday if you see him. Posted Feb 13, 2008 10:41am It looks like Tom is now readying himself for some R & R. Rehab and Recovery. Things seem to be moving fast. Tom is responding well to breathing treatments and little by little functionality is beginning to return. The extent of return is still unknown – but knowing Tom he will push and push to get the most out of his body. That being said – once Tom puts his mind to something – look out – he will want to move quickly. We need to be ready for him. A lot of you have offered help financially both with direct donations and managing fund raisers to help fund what will be an extensive and EXPENSIVE process. We appreciate all these offers. We have been gathering as many facts as possible with regard to the best way to handle donations. We believe we are finally reaching some answers and should have something set up in the next week to 10 days. We are now ready to start planning some of these activities that will be both fun and financially positive for a great cause. Because Tom’s care will be very time consuming, the family is asking for any help that we can find. We will not be able to manage everything, but want to be sure everything is done in good taste and in good fun. We would like to host a meeting for anyone that has the time and energy to get these things going. Some ideas have been golf tournaments, bike rides, 10K runs, car washes, poker runs….the sky’s the limit. If you can help us in this endeavor please send your contact information to our new e-mail – TomsRecovery@gmail.com. We will need volunteer planners, workers, donations, etc. On behalf of Kim and Tom’s whole family we again thank-you for your prayers for Tom. They are not going unanswered! Posted Feb 13, 2008 11:49pm Tom was off the vent and breathing on his own for five hours today. In my perfect world, he would have been moved to Valley Presbyterian Hospital 48 hours ago (and I greatly thank all those who helped me in my quest). My first goal for today with Tom was listen generously, the second was advocate mightily. 400 phone calls later, I may have come to the last fork in that road. It seems that it may not be so easy to find a physician willing to take a 49 year old male who has been so near death, so many times the past three weeks. Well, I hadn’t thought of that one. It didn’t cross my mind because I was sure I could find a hundred nurses who would accept him. Now I am at peace with my efforts, and results. The facts are not set in stone, and he may still be transferred to Barlow (the ventilator rehabilitation facility on the Valley Presbyterian Hospital campus.) But Tom has two more days toward health under his belt and moving him doesn’t seem quite so important. He is starting to gain strength and if he waits it out in Bakersfield a few more days, how cool would it be if he could go straight to rehab from ICU. Goals for tomorrow(thank you Susan); Range of motion and moisturize. :o) Posted Feb 17, 2008 9:10am It’s a science and a delicate dance. If he had one ounce of “I can’t” or “I don’t want to” in him, then I’m certain that he would have taken that road last week. This man is not done by a long shot. Each day and each challenge that comes is just like a puzzle we need to complete. I know that together Tom, the doctors, the angels and I, can woo his body into its best possible recovery. Thursday and Friday Tom was off the vent for more hours than he was on it. Everyone was very impressed with his progress. Saturday however, it proved to be too much work too fast. They are giving him a 24 hour break (back on the vent) and will re-evaluate the plan of care Sunday and Monday. His legs have become more active, but it appears to be involuntary at this point and its just too soon to make any assumptions here. This is the place to be if you have had a trauma but because the doctors and nurses at Kern County Medical Center have never taken care of a Bolewski, I can hardly say their opinion on his recovery is an educated one. Many people here that are amazed that Tom is even with us. Besides the numerous angels that hang around and watch over Tom, I truly believe that we would not have been able to share another day if Todd Porter were not with him the day of the accident. Thank you to my boys Danny & Alex and their cousin Timmy for keeping their heads, being resourceful, responsible and helping Uncle Todd. I believe that the doctors and nurses in the Trauma Center and Intensive Care Unit have kept him going numerous times so he could gain strength. Thank you also to the Santa Clarita Velo. Because of you Tom was challenged every week to strengthen his respiratory system. We couldn’t have made it this far without all of you. Posted Feb 21, 2008 1:32am I had a great day with Tom today. It’s so nice to have a moment again when he is gaining strength. His lungs continue to show improvement and he was awake for most of the day. It’s terribly frustrating trying to explain to these people that Tom is not like other patients. How many times I have heard “the science tells us that Tom should be doing this or that”, and I have to tell them once again who they are dealing with. If he says he is too tired, you bet you’re a** something is going on because “too anything” is not in his vocabulary. If he says something hurts you better believe on a scale of one to ten it’s a thirty. If he says he is dehydrated, he knows what he is talking about and you better give him more fluids. Words are few and kept mostly to the necessities…yet when coherent he manages to make the respiratory techs explain all the numbers on his ventilator. Beats the heck out of me…pounds per square inch or liters in and out, pressure, assist, blow-by, tork. He is already telling them how to adjust the ventilator. I’m just happy I know how to squeeze the ambu-bag. Still making a hundred phone calls each day trying to get him closer to home and someplace they can do more for him. He deserves it! Posted Feb 22, 2008 12:58am Okay! The first obstacle is gone! As I write this Tom and Kim are in the ambulance bringing Tom closer to home. He should be at Valley Presbyterian Hospital within the hour. As most of you know, Kim and family have been fighting to get him here right up to this morning. Kim was remarkable in her efforts to get the best for Tom. This is the first step toward getting him completely off the vent and on to Rehab. Tom is very happy to be moving on! He told Kim to get him to the Ambulance and get him out of there, he is ready! Kim has quite a story behind her efforts, and we are all grateful for the assistance she received from the VPH members as well as others. I will let her handle the individual Thank you's since she knows just who helped her, but rest assured this is happening because of her unwillingness to accept anything but the best for Tom. It will take a day or so to get Tom situated in his new environment. Look for a more detailed update from Kim soon. Also we should have a pretty good idea when Tom can receive visitors, once we get him situated. We do encourage cards, they can be sent to Valley Presbyterian or the Bolewski home. We will post a room number when we know it. Tom has been hearing all these messages on the carepage and really is encouraged by them. Keep the prayers coming they are being heard. Posted Feb 22, 2008 10:44am Todd here again, Kim asked me to put a quick update in this a.m. Tom got to VPH and was extremely excited and happy to be there. He had some very good voluntary movement in both legs last night for the first time, and was even telling Kim to get him on a bike to work his legs. We are definitely hoping this is just the beginning of some very good things in Tom's rehab. Posted Feb 24, 2008 10:30am I try to keep these postings short, and to the point but I have to thank three people first. Phyllis Bushart at Valley Presbyterian Hospital, Lee Exton and Walt Pregizor at Keenen. These three very busy people gave me their private direct lines and never refused a call from me. They answered every question, and made numerous calls daily on Tom’s behalf trying to get him to a facility that would aggressively treat his current conditions. Words are inadequate to thank you, so maybe I can send you a pair of “nana slippers”. Hand made by our nana, they are coveted in our family as special blessing. As they give your feet a little hug you become aware of their ability to make you feel safe and cared for and thus have a great ability to heal. Wednesday and Thursday Tom was once again healthy enough to travel yet he had to wait while the insurance company dragged their feet. I could see that the hopes of new help for Tom were keeping him going, yet the wait definitely took a toll. It was 10 PM before the ambulance arrived to transport Tom, and 1AM Friday before we reached our temporary destination of Valley Pres. Closer, yet still not the ventilator rehab facility that Tom needs. Drained, exhausted from the fight, and the first 12 hours were almost too much for both of us. I’m sure the doctors were wondering why a patient in his condition was transported at all. I found my self saying to each doctor “he is just having a bad day, wait until you see what he can do.” Every time I said those words, it was like a confirmation that at the end of this road, we were going to have good story to tell. I mentioned to you our best day was at week three and there was some return of function in the lower extremities. That was the only time I saw it, and believe me I have spent some time watching those toes. Today, Tom raises his knees off the bed four to six inches and pulls his feet as if he is riding. “Tell them to get me onto a bike” he says. Hold on cowboy, first things first. Healthy lungs, then the Tour de France! Posted Feb 27, 2008 9:26am Once again Tom is gaining strength and the days in the hospital are getting long. I think he would appreciate short visits from family and friends. If you go, you need to speak up and read lips. His hearing has not been addressed as of yet, but because he is stable now they are looking into it. He likes to know what is going on in the outside world, and neither of us has watched the news for six weeks. He still has an unexplained fever that has been spiking at 103 every night, but I hear this morning that they even kept that down a bit. His pneumonia is gone and there is no sign of infection. Barlow has sent someone to evaluate him and they say he appears to be a good candidate for their unit and they think they can help him. He is still very motivated to work hard and get through this Posted Feb 29, 2008 8:52am Tom is at Barlow Respiratory Hospital! No fever for 36 hours and he is no longer packed in ice! He had a full body scan yesterday morning as a precaution and it’s negative. Now we are on the road, we have direction, we have a plan, and we are moving forward. He has 28 days to get off the vent and he is in the best place possible to help him achieve his goal. Posted Mar 3, 2008 11:25pm Kim has asked me to update the page. Tom continues to work toward getting off the vent. Although we have been encouraging visits to Tom at the hospital, we have realized that Tom requires so much energy to focus on getting better that he is worn out in a short time. He has enjoyed the visits, but seems to be tired and anxious afterward. We are sorry for the change in direction on visits and hope it will be very temporary. Please check with Family before stopping by the hospital for now. We love you all and the prayers are very welcome. Our ultimate goal for now is to get the most out of his stay at Barlow, and rest seems of utmost importance. Thank you once again and if you have any questions fell free to contact me. Todd Posted Mar 5, 2008 10:48pm Monday, Tom was taken off the vent again. He made it two hours with no problems. Tuesday he was off for four hours, and today he was off for six hours. This is extremely difficult work for him and combined with physical therapy, visiting has been put on the back burner for now. He still ends up with a fever in the evening that concerns everyone and initiates a ton of lab work (like it was something new that nobody had ever seen before.) If I’m with him, as soon as he gets warm I get him ice bags and the fan and make sure he gets Tylenol. I try to tell them he is just a hot guy, but nobody thinks it funny. Anyway, we are on the road and moving in the right direction. Kim Posted Mar 10, 2008 11:42pm Friday Tom was off the ventilator for 8 hours and on step 13 of the 19-step program at Barlow. Unfortunately that evening his fever spiked to 102 and this kept him from making any progress on Saturday and Sunday. Today is Monday and Tom’s sister Sue spent the afternoon with him. It turns out he had a very full day. He was off the ventilator for 10 hours today and this puts him at step 14! He had physical therapy, occupational therapy, speech therapy, an ultrasound, saw the Nutritionist, the Neurologist, the Infection Specialist, and the big news of the day… his first taste of food in seven weeks; he ate applesauce! I am so happy. It’s going to take a lot of apple sauce to replace the 35 pounds he has lost, but its another step in the right direction….I see a Jamba Juice in the near future! Posted Mar 11, 2008 6:09pm We are finally moving on getting some fund raising together. There are some big things in the works and we will keep you all posted. We have set up new site for communicating our fund raising activities - keep watching TomsRecovery.com. This will be our main info link. We will keep posting Tom's condition up dates to this Care Page. There is a direct link from TomsRecovery.com to the Care Pages. A big thank-you from all the family!! Posted Mar 14, 2008 11:31am First we have to tell you how great Tom is doing getting off the vent. He did 16 hours day before yesterday and we are waiting to hear if he completed is 20 hours yesterday. Power to the Brewski! Next - we had a great fund raising meeting last night. Big things are planned. 2 items already on the calendar - April 19th big garage sale and April 26 - Texas Hold'em Charity Tournament. Go to www.tomsrecovery.com for more info. This is the web site we will be using for our fund raising efforts. When you go to web site please click on forum from top menu bar. When new window opens choose register. It will then ask you to fill in a few simple questions. Once this is complete you will be notified when new fund raising activities are posted. You can also direct questions to any other web site forum members. This is another great communication tool. It is amazing how Tom's Team has mobilized. With this group of friends and family anything is possible!! Keep the positive energy flowing! Posted Mar 15, 2008 9:36am Yesterday was Graduation Day! Tom was taken off the ventilator at 9 AM…with no plans to return! He will take it easy for three days then more aggressive steps will be taken toward removing the tracheotomy. The doctors are all walking around patting themselves on the back. I know what they were thinking when we arrived, they made it clear to me that he may not make it (well that was old news, how many time had I been told that already.) I just kept telling them that he was not your average patient. I told them that he had returned from the edge of life many times already to tell me that he would not be leaving. I told Tom about the meeting at the house on Thursday, and showed him the photos. What a great group! He was very touched by everyone’s generosity. Tom misses everyone terribly but he is still exhausted and not ready for visitors. We aren’t sure where Tom will be going to next, but once again he has made it clear he is deserving of the best. He sends his love and thanks to all of you, Kim Posted Mar 21, 2008 9:11am Tom continues to get stronger. We are now waiting for evaluations from a couple of spinal cord rehab facilities. This will be his next step in coming home. We do have some great fund raisers planned. April 19 HUGE Garage Sale. April 26 Texas Hold'em Tournament. Info on both of these can be found on TomsRecovery.com. Posted Mar 21, 2008 9:43am I was having a little party in my head when I walked out of the hospital last night. I once again have confirmation that he wants to fight to gain back everything possible. How did I get this information? He told me! We actually talked for 10 minutes today when the respiratory therapist capped his tracheotomy. This is huge for me because I have not heard his voice for eight weeks. He said he was looking forward to it not being so much work. He knows that this is his job now and wants so badly to work hard so he can come home. We are scouting facilities and rehab centers to get Tom the best. He will be moving from Barlow soon. A gigantic thank you to Mrs. Stiman’s class and all of Valencia High School for your support! Please check out TomsRecovery.com for fund raising info. Posted Mar 23, 2008 10:02pm I’m sitting by his bed waiting for the respiratory therapist to come and insert a speaking valve on his tracheotomy. Tom has something to say. After not talking for months you can’t imagine how important your words become. He knows this will be a strenuous exercise and he struggles slightly in-between words. I am so excited to hear what he has to say I can hardly stand it. “I want a giant coke with lots of ice and a six dollar burger hold the mayo.” Followed by “I can’t believe after 23 years of marriage NOW you want to listen to me.” I think I grew an inch from the weight being lifted off my shoulders. Not only to hear his voice, but to hear humor and to be able to laugh was a gift I have been waiting for, for a long time. Tom tells me he credits the Santa Clarita Velo for keeping his lungs strong enough to get through this. He said “When you are riding with the club on a long up-hill climb it would be really easy to turn around and go back home, but you don’t. This is the same thing, you just keep pushing on.” Thank you again to all his friends in the Santa Clarita Velo. Kim Posted Mar 27, 2008 7:29pm I wait, sometimes for days, for a good story or a bit of good news to post for our family and friends who check in on Tom. The forward progress is slow but I’m thankful that we haven’t had any set backs for weeks. He is generally in good health, his lungs are clear, no infections, no wounds. When supervised he can have a special valve put on his trach so he can talk and he can have ice chips (I got in trouble for giving him Jamba Juice.) Two days ago we found out that Tom was turned down for rehabilitation at Rancho Los Amigos. Not forever, just for now. He needs to be able to endure 3 hours of therapy a day to be accepted and he is just not strong enough yet. At first I was crushed. I knew Tom had his heart set on moving to the next stage of recovery. Now however, I see that having focus will help him move forward. He wants a chart posted of his progress. He wants to know what his goals need to be, not day-to-day but minute-to-minute. (queue up the Rocky theme song) When Todd came by to see him yesterday, Todd got him to talk for 40 minutes and that’s a personal best. Later in the day, he was put back in the cardiac chair for 30 minutes, (aka the Cadillac chair changes from a gurney to a chair) something he had not done since he was at the trauma center. We are making sure he gets physical therapy twice a day. He has to get to rehab, he WILL get to rehab because this is the road home. Posted Mar 31, 2008 11:29pm This morning we learned that Tom has a bladder infection. Bummer. Dr. has ordered antibiotics and they were started last night. Fabulous. 9 AM I received a call from Rancho Los Amigos Rehabilitation Center asking to confirm his date of birth, address, social etc. (Interesting, someone is taking a close look at Tom over at rehab. Fabulous.) 10AM Tom has more than one bug in his bladder. Bummer. 11AM I am officially told that Rancho is considering Tom. Fabulous. Noon Consideration is pending review of the infection. Bummer. 1 PM The antibiotics at not working on the bladder infection. Double bummer. 3 PM He is accepted for rehabilitation Fabulous! He will be moved to Rancho in Downy tomorrow, ONLY if he doesn’t spike a fever tonight. We wait. Posted Apr 4, 2008 5:33pm Just wanted to let everyone know - Tom is on his way to Rancho Los Amigos Rehab Center. Kim will send out more info later. She spent the night with Tom in the hospital last night. She wanted to be sure everything was being done to get rid of the fever - it worked. She is now home getting some much needed rest. She will be at Rancho tomorrow morning early. Through all of your love and support, we have overcome another challenge in Tom's recovery. Onward and upward! Posted Apr 8, 2008 9:20am He made it. He is at the best rehabilitation facility on the west coast, Rancho Los Amigos in Downy. Tom was very happy from the first day. He is so happy to be in a place where they don’t treat him like he is sick. He gets to wear tee shirts, sweats, and in his words “man pajamas instead of a long bib with sleeves”. I started typing two hours ago and ended up with a three page informative essay on spinal cord injuries and recovery. I have decided not to post until Tom and I have a meeting with the doctors at Rancho. By Monday we will have discussed his discharge and what we need to get to that point. It’s both a relief and scary at the same time. I change my words and my mind every time I complete a sentence here. I have yet to believe a prognosis I have been given for Tom, good thing too. He would be in a nursing home in West Covina if I believe everything I heard. So, we will listen to all the doctors once again, then we will be able to make an educated decision on what will come next. With what I do know on the subject (possibly only in my dreams), I am thinking two months in Rehab, two months at home to build strength, then off to a rehab facility on the east coast where he will be outfitted with a bike, a lot of electrodes and a computer program so his work out can be monitored at home, from John Hopkins University. We will see. On the lighter side, Tom is approaching 10,000 hits on his web pages. Thank you to everyone who checks in and sends all the prayers and good energy his way. Jason has done a wonderful job at tomsrecovery.com. For the past (I don’t know how many) years, Tom and I have played poker on the weekends with friends…hello my poker friends. If you are a Texas Hold-em player we need you for our fund raiser on April 26th. Steve & Cindy McAfee have donated their business “Line Drive” in Santa Clarita for the venue. We have dinner from La Cocina and live music by the band “Frequency”, my personal favorite. We have very generous gift donations for the evening also. Please go to tomsrecovery.com for the flyer or cut and paste the following link in your address bar and send in your reservation. :o) Posted Apr 15, 2008 9:02am It has been a few days and the family just wanted to let everyone know how rehab is going. All we can say is Tom is BUSY! Rancho is keeping him "on the go" all day. He is scheduled for some type of class or therapy every hour on the hour. He was given his own "power" wheel chair yesterday, and is now learning "to drive" all over again. On the Rancho campus he is no longer treated as a patient. He is up, dressed, and out of the room by 10 am. The family attended a meeting with his team of Doctors and Therapists. They laid out Tom's rehab plan and what we can all expect when he comes home. Plans are now in motion to get needed equipment and do some home improvements so that his homecoming is seamless. He still has several weeks at Rancho "in training", but we are all looking forward to his coming home. Just a reminder - the Texas Hold'em tournament is coming up fast. La Cocina Mexican Restaurant is helping us out with the food and we need to give them a final count. Please mail your flyer ASAP so that we can get you on the list!! The family looks forward to seeing everyone! Flyers can be downloaded at TomsRecovery.com Posted Apr 18, 2008 12:03pm First - a big thank-you to everyone who has been participating in getting our fund raising going!! First big event this week-end - Garage Sale. It will be huge!! Our next event is the Poker Tournament - April 26. We need everyone to please RSVP by Tuesday. We need to give final count to La Cocina (doing the food - THANKS) and to event planner for tournament set up. You can sign up at Garage Sale. Please remember all checks need to be made out to Tom Bolewski Special Needs Trust. Kim cannot except any checks made out to her or Tom directly. Thanks for understanding. Our biggest event will so far will be the BBQ/Concert in the Park - this has grown into a giant event. We will have bands, special guest singer, car show, bouncer, dunk tank, food, drinks, fire truck rides, prizes. This is set for 5/24. We need volunteers. Carlos Cavillo is organizing this - please call at 661-644-2948. Lastly - we need to prepare Tom's house for his home coming (5-6 weeks). This means some remodeling inside and out to make everything wheel chair friendly. We are looking for anyone with drywall, painting, plumbing, tile setting, concrete experience. We will be setting up some work days. If you can help out with this, please contact Skip at fishnshop@sbcglobal.net Thank-you all in advance!! More info can be found at TomsRecovery.com Posted Apr 21, 2008 6:32am Thank you Irma Tamayo, Buckeye Court homeowners, and my friends who worked all day at the garage sale Saturday. It was a whopping success. I have never seen anything like it. Eight houses had items packed from their garage doors down to the middle of the street. I heard that the whole thing was cleaned up and returned to normal by 4 PM and you couldn’t tell that a thousand people had just been shopping. It was really something to see. This Saturday: Texas Holde’em Tournament at Line Drive… TOMS UPDATE The wonderful therapists at Rancho Los Amigos are working hard to get Tom home as soon as possible, and as safe as possible. They are working to strengthen the muscle groups that are responding at this time and avoid commenting on anything else. He actually drank 4 oz. of water on Friday and they think he will be eating some kind of food by the expected discharge date, end of May or early June. The tracheotomy will stay as long as he is not strong enough to cough sufficiently. He motors quickly around the facility to get to his daily appointments driving with his chin and I often find it hard to keep up, imagine that, following close behind with his oxygen tank (we are quite a site) He should be able to drive the wheelchair with his hand before check out. He still sounds like Marlon Brando but it means everything to me to be able to hear him talk. He surfs the web with a skateboard under his arm so he can use the mouse. Each person on his team is assigned a task of dealing with insurance and obtaining equipment for him at home. At this time he needs a custom van, a custom power wheelchair, a shower wheel chair, a suction unit, a hoist, and a special bed. He will need a nurse for some things while he is at home, and an aid. We are waiting to hear from insurance as to how many hours a day they will pay for help to come to the house. We will hopefully have a visit from some of his therapists for suggestions on home modifications. Papa Skip is chomping at the bit to rip something out and build something new. Nana helps me keep my finances in order and Carrie and Todd organize the forces so Susie and I can take care of Tom. There is an apartment a block away from Rancho that is owned by the local Assistance League for out of town relatives of patients in rehab at Rancho. They only charge us $10 a night so Tom’s sister Susie and I go and stay when we can. I am so thankful that this situation as brought so many people together in support of Tom and our family. I am sure I couldn’t have made it this far without my friends and family, neighbors and co-workers. Tom and I decided when we came to Rancho that we were done being sad. It’s impossible to avoid completely but we do everything we can to dissuade the emotion. We have life, we have people who love us, and we have work to do. Posted May 1, 2008 9:52am Guess who called me yesterday on the phone? Tom! It’s the first time I’ve received a call from him since January 19th and you can imagine I almost dropped the phone. He has a phone in his room that has one button speed dial. He is also very happy that he can move not only his toe, but his whole foot. A few days ago he was able to flex his quad and calf on command. The right leg seems to be moving forward, funny I think in the trauma unit they were telling me that his left leg was showing more strength. Quote of the day… He told the boys yesterday that "none of my friends can ever say that three women are about to come in the room and strip me butt naked". Alex responded with "that should be more interesting than the breathing exercises, but I'll wait outside". I think I figured out why his jokes are so funny now. He made me laugh before, but now when he says something funny we feel the fear of loss ebbing (another emotion for which words are inadequate). It’s a great relief, so we laugh as often as possible. He has been drinking a little water every day trying to strengthen the throat muscles and has another swallow test on Friday to see if there has been any improvement. Cross your fingers. He says that the craving for food is so bad that even the fast food commercials look good. He was licking his chops over a KFC snacker. We are getting more comfortable with the lift we will be using at home. He zips around in the chair and tells me he thinks his battery must be dying because he can’t go fast enough. Imagine. Fund Raising Update: I want to thank Steve and Cindy McAffe and Line Drive for the Texas Hold’em tournament. Thank you to the Buckley’s and the Altman’s for untold hours of volunteer time it took to feed and entertain so many people. Thank you, Mike Fessinger, for keeping the tournament running smoothly. We had about 100 players, and another 100 people who came to enjoy the party. Together they raised almost 20 thousand dollars for Tom’s trust fund and this will go a long way in helping us to prepare for his homecoming. Papa Skip has made huge strides in home modifications, thank you to everyone who has shown up here this past week to help him. When he is done, Tom will have a shower downstairs and a ramp to the park! The Calvillo’s are planning quite an event in the park on May 24th. A free concert in the park and car show with special guests. Barbeque meals will be available and a kids zone. Carrie is collecting gift basket items for raffle, we will have sno-cones and cotton candy. Please email us if you are interested in signing up to help for a few hours. Posted May 4, 2008 8:45am The swallow test went well. It takes two or three to get some applesauce down, but it works! That was very interesting to watch and should continue to improve. He is also off oxygen and they completely cap his trach during the day. I can’t believe we are seeing so much improvement. He is really getting ready to come home! I just can’t believe it! Kim Posted May 8, 2008 12:36am It’s so wonderful to have good news to report. This morning Tom had a banana and an egg! He is now driving his chair with his hand. He also called me at work yesterday. Tomorrow they will look at his vocal cords with a scope, and possibly do a small procedure to help him get his voice back. Right now it’s still just a tad above a whisper. Thank you thank you thank you to Clarin Davis for writing the song “New Beginning” for Tom. You have your finger on the pulse and you hit the nail on the head! If anyone wants to be inspired, go to myspace.com/tombrewski and listen to what a talented teenager can accomplish. Posted May 13, 2008 8:17am Thank you again Clarin Davis and Brian Kennedy for Tom’s song “New Beginning”. We start everyday with it. We are busy preparing for Tom’s homecoming and his upcoming event; Mountainview’s Concert in the Park on May 24th. As soon as we have the itinerary done for the day, we will post it on his web page tomsrecovery.com. The Calvillo’s have a full day planned. Tom is scheduled to be discharged on May 20th. He is extremely anxious to get home. I’m a little anxious myself because once again his move is on the table and awaiting approval from the insurance company. Those of you who have been reading since the beginning know that my insurance company tried to tell me that Tom had to go to a nursing home. Not just any nursing home, a nursing home in West Covina. Hopefully we have paved the way for smooth sailing after that nightmare. Did anyone see Extreme Home Makeover Sunday night? Just checking. Tom & I watched it together. Tom has an incredible attitude and it never stops amazing me. Like, “Alright, now let’s just get to work, can we?” He had another test, a scope to see why is voice is not rebounding. Apparently one of his vocal cords is paralyzed, and one is barely moving. This is probably due to trauma from the helmet striking his neck. The little voice he had was due to secondary muscles trying to make up for the loss and they are just about shot now. We have had different opinions as to whether or not to attempt a small procedure to push the cords together. Some say wait 18 months to do it, some say do it now and reverse the procedure in 18 months if the problem corrects itself. He wants his voice back, but we have learned to be patient. We are planning on bringing Tom home on a day pass for the concert in the park if he has not been discharged yet. We are looking very much forward for the opportunity to see everyone and thank everyone who has helped us get this far. Posted May 14, 2008 9:02pm Wa-hoo! Tom and I have a date tomorrow night at the apartment on the campus of Rancho Los Amigos. Doctors want to make sure he and I can make it over night without help. Ha! Discharge is set for TUESDAY and confidence is high! I love you all! Kim Posted May 19, 2008 8:10am My how time is speeding past. We survived our date night. It was nice to be alone for the first time in four months. Tom ended up spiking a temp of 101 for unknown reasons. So in comes the RN, then the LVN, and the lab tech to draw blood. Between that and his battery of meds, procedures and therapy, we didn’t sleep much. I am grateful that he will be coming home with a full time nurse. Equipment is being delivered to my house today, and then we are all set for Tuesday check out. I still can’t believe it. Posted May 21, 2008 4:46pm He is doing FABULOUS! Thank you Todd and Tony for helping us get him home. Susie and I took care of him last night and he slept all night for the first time in four months. His first nurse showed up this morning at 7 AM. He had real scrambled eggs for breakfast with real toast and real butter and a slice of apple strudel from the German bakery! Then…it happened….he did it….HE MOVED HIS LEFT TOE! I knew he had it in him! We are all so happy.
Posted May 23, 2008 6:54pm Some of you have called, concerned that the weather may be a problem tomorrow for a big BBQ Concert fun raiser. No WAY!! We are moving full steam ahead. THE LAFD MOAB (Mother of all BBQ's) is already in place. The food has already been delivered. People are in place to be sure everything his a great success. We have ordered sunshine!
Rain, snow, hail, wind.......nothing can stop us! This freight train has already left the station and it aint stopping until the last song is sung, hotdog is eaten and raffle basket won!!
See you all tomorrow!!!
GAME ON!!
Team Bolewski Posted May 26, 2008 8:48am How about that weather? There must have been a little umbrella over Mountainview Park because it never rained on us. Aren’t my neighbors awesome? Isn’t my family awesome? What a fantastic community we all live in. Weren’t the gift baskets and auctions fabulous? Wasn’t the car show great? How about the live music? Did I mention the food? I heard the MOAB went through 1500 hotdogs. That ol’ Tom ate a huge chili-dog and I couldn’t drag him inside for nothing. We met the most wonderful people who came out to the park just to meet Tom and give him words of encouragement. Then we slept…and when we woke up it was all cleaned up, like magic. Maybe it was the scouts, maybe the firemen, we don’t know. Thank you all from the bottom of our hearts. Kim Posted May 27, 2008 10:49am Tom had a visit from Aaron Bakers yesterday. Check him out at aaronbakers.com, he has quite a story to tell. Aaron had broken cervical vertebra 4, 6, and completely shattered the 5th and told he would never move from the neck down. That was about 10 years ago. Well, he came walking up to my front door to see Tom and give him words of encouragement. He is leaving on a cross country bicycle tour next month to raise awareness and funds for spinal cord injury research and rehabilitation.
The party isn’t over yet, Tom is determined to make it to the dinner and comedy show at Marie Callender’s on June 1st. The boys have told me that they will get him there. If you are free that evening and would like to join us, go to tomsrecovery.com for more info.
Our challenges of the day…
We are a little tired today, our night nurse didn’t make it last night.
Dr. appt in Northridge and Tom is not eligible for Accesses Services (a door to door taxi for handicapped) for another two to three weeks. I will drive to Van Nuys to rent a van with a lift, then return home to fetch Tom and his nurse.
Tom wants desperately to decrease the amount of meds he is taking; yet the pain seems to be getting worse in his shoulders and chest.
He has been accepted at Northridge for outpatient physical therapy, yet there is a 6 week waiting period for new patients. We need to find a therapist that will work with him for the next six weeks while he is waiting.
Received a letter from my insurance saying that my home health coverage will be depleted in five weeks. I need to contact them and get verification that they will flex my policy to keep Tom from being admitted as an inpatient.
One day at a time, one challenge at a time, one phone call at a time. We can do it. Thank-you again for all of the emotional support you all provide. We want to say again how humbled we all were at the BBQ on Saturday. Forget the financial support - which was tremendous - the out pouring of love and support of Tom and our family was something words will never be able to explain. Let me just say that heaven must have been very empty on Saturday because I am sure every available angel was at the Mountainview BBQ! My love to all of you! Kim Posted May 29, 2008 6:08pm Tom is going to be admitted to Northridge Hospital Rehabilitation Unit tomorrow morning, for two weeks. He is very happy he was able to come home for these two weeks, but we both understand that he needs more intense therapy than he can get here at home and are looking forward to progress, and more education. TONIGHT: We are going to push Tom down to LaCocina for our son Christopher’s 20th birthday. We will be at the table at the back of the bar at 7:00 PM. If you want to join us for a margarita…we would love to see you. Love to you all, Kim
Posted Jun 8, 2008 9:56am It’s taken a few days for Tom to get settled in at Northridge and into a routine. He is happy to be getting the intense therapy again, but not so excited about having hospital food. If you visit and you can’t get your hands on an apple strudel, at least take him a Jamba Juice, it will make his day. One of the most frustrating things to deal with is not being able to call him on the phone and ask him what he wants. Now that he has a new set of doctors, its nice to be getting more information and more opinions on how to handle recovery. The doctors have not yet had a meeting to discuss Tom’s discharge plans, so I’m thinking it may be more than another week. He is still joking, trying to make everyone around him at ease. If you ask him a question he says “what is my body language telling you”, or Holly asked him if the coke made him burp, and he replied “no, I have too many escape valves”. I just love this man. Tom's article in the Signal paper today. You can read it at http://www.the-signal.com/news/article/2272/ Posted Jun 13, 2008 7:55pm Tom peddled a bicycle wheel with his arms the other day! He had feeling all the way down to his wrists and a tingling in the back of his hands. We don’t like to get too over excited right away, but we are! He also said that one day he had a glimmer of “light sensitivity” in his right eye. They have down sized his trach, but have not pulled his feeding tube out as of yet. Tom is scheduled to be discharged in one week, but that has not been confirmed. We are waiting on insurance, surprise. I am happy that Tom is participating more in his care plan, he is asking for more aggressive therapy at all times, surprise. Sunday for fathers day, the boys will be in Glendale all day manning a booth at the bike race. The Santa Clarita Velo set up a raffle to benefit Tom’s trust. Thank you again SCVello. Posted Jun 18, 2008 9:13pm Tom will be home from Northridge Hospital Rehabilitation Center on Tuesday June 24th. He continues to improve in strength. His arms are moving at will and he is moving his right leg very well. He had a procedure on Monday by an ear nose and throat doctor to attempt to help him with his voice. It was a frustrating 48 hours. Quite a lot of despair because they took away his food again, and reminiscent of the trauma unit when he couldn’t talk or communicate with the staff. Tuesday morning he had cortisone injected into his shoulders again. This time it was done in radiology to insure correct placement. This was another day he missed all of his therapy. Difficult for Tom, but nice for me to see that he is still driven to move forward and will be an active participant in directing his future care. He still has his trach, but they have down sized it…his nephew Brian says “my uncle Tom has a new size gauge in his neck”. I have to say that describes it accurately. As for the voice well his throat is still a little sore, but the good news is that I think I hear some volume. I’m planning to take Tom to one of the Red Brick Pizzas on Monday, July 14th for his birthday. (This will coincide with the fund raiser that the Santa Clarita Velo is doing during the Tour de France.) Maybe we can all meet for pizza and beer! Posted Jun 24, 2008 12:55am Sure enough every time I post something on his page, Tom comes up with more news-worthy happenings. The very next day he had improved feeling in his arms down to his wrists, and tingling in the back of his hands. Yesterday, more feeling in his legs. He will be home tomorrow and we begin our first attempt at finding a routine. Somewhere in between stationary and Mach-5. Not a routine for just getting by, not a routine of surviving, but a routine with a mission. Every day. Like he has always lived. Our home health care coverage should last another month, so he will come home with a nurse 24 hours a day. We may have a two month gap before the state of California will only possibly kick in and help pay for an aid…that will be interesting. By then, he may not need 24 hour care. It’s like a dance of paperwork spinning in a cyclone. After the hundreds of papers I have filled out and sent all over the State, I am amazed when a piece or two falls into place. Because of our successful fundraisers, we have picked out a few things we will be purchasing for Tom. We have our eye on a table for him to do his weights at and an elevated mat to do stretching and exercises on. We are waiting for the arrival of his motorized wheelchair before we can think about purchasing a van and we are working on the insurance company to possibly help pay for the FES bike that Tom wants (not holding our breath for that but it’s worth a try). Tentatively, (what’s not tentative) Toms birthday dinner has been moved to Sunday July 13th at the Red Brick Pizza off Magic Mountain. I think Sunday we have a better shot at him not being booked at a therapist or doctor’s office. Posted Jul 1, 2008 7:20am We have had many little speed bumps on the way and sometimes our direction seems more like a slalom course but thank goodness we are moving forward. Tom is gaining strength. I just realized he has found some core muscles to help with positioning when he is sitting in his chair. We have to watch closely for it, but the good news arrives daily. We were secretly happy when we found out that we would not have a nurse at home with us this past Saturday. This way we could have nice leisurely day. We decided to attempt a birthday party in the afternoon and are so happy we did. Dave & Cindy helped us get there and Ed and Susie made it so nice for us. We ended up staying out until 9PM playing poker. When we returned home we found a “welcome home” gift left for us by the Santa Clarita Velo…could it be? Apple Strudel! It was all around a fabulous day. Sunday…we eat strudel and rest. We are blessed with such a wonderful group of family and friends. We are just days away from purchasing a van for Tom. It’s quite an ordeal getting packed up and in a car for appointments. In the van, Tom will be able to roll in, and ride in his chair. Dilemma du-jour; Tom’s custom wheelchair project was shelved by the manufacturer because they found out that my insurance will not pay for it (18K) due to the cap on durable medical equipment. I guess they are not used to dealing with people who have such fabulous friends and family. Tom & I want to send out a gigantic thank you to everyone who has attended Tom’s fundraisers, or sent in donations. This will be the second big purchase from Tom’s Special Needs Trust Fund. I have been corresponding with Irene at the Santa Clarita Velo and they have quite a list of raffle items for the Tour de France party at Red Brick Pizza. Looking forward to seeing everyone on July 13th to celebrate Tom’s birthday! If you go to tomsrecovery.com you can click on the banner for this event and print out a flyer. Anyone who brings a flyer to the restaurant, Red Brick Pizza will donate a portion to Tom’s Special Needs Trust. Posted Jul 8, 2008 10:39am TOM IS MOVING HIS FINGERS ON BOTH HANDS!!! It’s been six months, and BAM! First the left index finger, then the right index finger. Yesterday his physical therapist said she felt muscles flickering in other fingers also. OMG! I assure you, this is what Tom has been praying for. I told him that two months ago, a tiny wiggle was all we saw in his right toe. Now he can move his entire foot, ankle, and leg. And we have more good news… We have a van! I have hesitated posting about the van because I wanted to thank specifically the McAffee’s and Line Drive Baseball Academy and the Mountainview Community. But I couldn’t do that without thanking the Santa Clarita Velo, & Taylor Made Landscaping. Once I start, it makes me very nervous because I’m sure I’m leaving people out. R&S Automotive, Dave & Cindy Smith, Carlos & Linda Calvillo come to mind right away. This doesn’t touch the list I know. All of my wonderful family and friends who have helped. For now I just have to thank the Lord and then maybe I have everyone covered. Current projects at home: Craig Brown is building Toms’ work out table so he can pull weights with his arm skateboard again. Papa Skip and John Wolenfstein are building Tom’s elevated workout mat for physical therapy at home. Bill Reynolds is putting the tile in Tom’s new bathroom. Please join us at Red Brick Pizza on July 13th for Toms Birthday…here is a link to print out the flyer. http://tomsrecovery.com/downloads/2008FundRaiserTourdeFranceColor.pdf Please bring it with you when you come :o) We are really looking forward to seeing everyone Posted Jul 11, 2008 9:15am ALL FOUR FINGERS AND HIS THUMBS!!! We are so happy here you wouldn’t believe it! He is exhausted every day from working every muscle he possibly can. This is just exactly what I had expected. Today we see the Ear, Nose, & Throat Doc and will request removal of the tracheotomy. Wa-hoo, were moving on! I will post photos after Sunday at Red Brick Pizza. The Santa Clarita Velo has quite a list of raffle items. The City of Santa Clarita has decided to donate some of the old street signs for fundraisers…We have “Bouquet Cyn Rd”. and “Lyons Ave.” for a silent auction this Sunday night at Red Brick! 25343 Wayne Mills Place (just west of Magic Mountain Parkway & the 5 fwy) Posted Jul 16, 2008 3:27pm So many things are happening. This morning I heard Tom grunting in pain so I ran to the room where he was laying on the bed. He stopped and gave me a huge smile and said I’m doing sit-ups. He actually lifts his head and shoulders up off the bed and does abdominal crunches now. Unbelievable. His work out table was delivered on his birthday also. It’s perfect! He is so excited to pull weights. The boys got his deep sea fishing sinkers out of the garage to hang them off the end of the table. It’s a start. Wow, what a pizza party! Tom had his first beer in six months. The weather was perfect for everyone to hang out inside and out, and Irene had a huge pile of VERY nice gifts to give away. Everyone sang Happy Birthday to Tom and that wrapped up a great event. That evening his wrists were very sore from showing everyone how he can move his fingers. Oh, and another thing, there doesn’t seem to be a nice way to say this so I just have to spit it out. If you see Tom, PLEASE don’t pat him on the shoulder. He has two very bad tears in his shoulders that will require surgery to fix. We are just trying to deal with the pain at this point. Everyone’s first reaction is to smack him on the shoulder. He never says anything but it took two days and a bunch of vicodin to get over that. If you didn’t make it to Red Brick last Sunday guess what, we are doing it again this Sunday night to finish up the Tour de France. The new van makes it so easy for Tom and I to get out. Please come by if you purchased raffle tickets because you have to be present to win. Everyone has to eat pizza, right? Love you all, Kim Posted Jul 30, 2008 10:51am I told Tom it was time to post, so I needed a small miracle produced for content. He said “How about I finish closing up this tracheotomy” (he still whistles Dixie through a pencil size hole in his neck). “That would be fine” I said. We changed the dressing one last time last night and BAM! This morning it’s closed. No air leak for the first hour or so. Unbelievable. By tomorrow it will be completely sealed. We are pushing the doctors to do surgery on Tom’s shoulders. If he doesn’t get it soon, we will have to get cortisone shots again. I can pretty much tell these doctors what we need and Tom get’s it, but I’m fearful that we may not be able to find a doctor willing to take the responsibility for his surgery until he gains some more strength. Tom has appointments for physical therapy at Northridge Hospital Monday and Wednesday for two hours and Friday for one hour during the month of August. There are many days that it conflicts with my work schedule. If any of his friends out there have some free time and would be willing to drive Tom (and his nurse) in his van it would be a huge help. I think Tom would like some new company too. (Bolewski@sbcglobal.net) The next thing that has me in a quandary: Tom’s voice. His voice is not coming back as fast as we had hoped, and it may be a while. It’s really no problem when we are at home, and in the same room, and the TV is not on, but when we get in a crowd it’s a big problem and potential dangerous situation. It seems impossible for someone to be sitting in the middle of a crowd and not be able to get anyone’s attention, yet this is the case. In preparation for the upcoming football games at Valencia High School, I’m looking for something like a blue-tooth for Tom with an open mic and an ear piece for me. Any suggestions? Some Get-Smart gadget I don’t know about? We are determined to get out, and not get stuck at home. Onward! Kim Stronger every day! Posted Aug 6, 2008 2:34pm Now Tom can officially move his fingers, thumbs, wrists, forearms, biceps, shoulders, feet, toes, calves, quads, glutes, upper abdominals and some muscles in his back. Can he get his hand to his mouth? Yes he can. Still pulling ¼ lb. weights on his table. His trach has closed and he has a small voice that lasts the whole day now. The current puzzle…keeping nurses at home (my in-home benefits have been depleted), and having surgery to repair his shoulders. We are on a mission to get the shoulders fixed now that he is strong enough. Tom is sure that when the shoulders are repaired, the pain meds can go. Like before, we can both sense when his recovery has stagnated. He NEEDS to move on to the next step so he doesn’t deteriorate. We are presently waiting to be squeezed in at SCOI in the valley. Blue Shield is attempting to help me flex my available benefits to keep Tom covered at home. My free time is filled with phone calls and physical therapy. Thank you again for the van everyone! It makes it possible for us to get out. We did a concert in the park a week ago, poker on Friday nights with the Smiths, Ostroskis and Taylors, dinner at the McMillan’s, and I think he wants to go to a movie this afternoon. Imagine that. It's a puzzle Posted Aug 14, 2008 12:41am I received so many calls of congratulations after the last post; I think I may have everyone celebrating a little too soon. Tom is still very much in the ‘recovery’ phase. He CAN move his extremities, but it takes a lot out of him. In order for him to get his hand to his mouth at this point it takes about 30 minutes of range of motion and PT on his hand, wrist, and elbow, then when he concentrates he can do it once or twice with his left hand. Then we need a nap to recover. As we were celebrating his accomplishments last week, I got a call about his power wheel chair. I was told it wouldn’t be delivered for about another three weeks. Shoot. Then I received a call from the staffing agency telling me that our home nursing would end that night. Yikes. Tom’s seven prescriptions that HAD to be ‘mail ordered’ per my insurance company, were now ‘lost in the mail’. Rats. Then I happen to look down at Tom’s feet and realized he has an infection. From what? From nothing, it just appeared. Darn. The phone calls begin again. Heat and ice on his toes to increase circulation. Interview possible nursing aids to help at home. The kids help make some new adjustments to his temporary wheel chair to make him more comfortable and safe. The wind doesn’t blow a breeze here, it’s a cyclone. Always. Now that the dust has settled on that chaotic day I find my insurance company has once again agreed to cough up the money to cover more home care for Tom. Whew. I think they just like to wait until the last minute to scare us. What they don’t know? Nothing scares us anymore. Nothing. Ya gotta laugh. We laugh every day, Tom makes sure of that. Tomorrow Tom sees the orthopedic. The SCOI office sounds confident that the doctor will accept Tom as a patient and do the surgery. The problem here is that they don’t know the history yet. Not that I haven’t tried. Remember when I couldn’t find any doctor to take him? Every day is a puzzle. Every night, we sleep well. PUZZLE DE JOUR Posted Aug 21, 2008 5:32am One thing we are having trouble adjusting to is that we cannot make plans for anything. If we try, we never write it in ink. ‘Good things take time’ and ‘one day at a time’ are the words I keep repeating to myself. Our hopes were so high as we waited for what seemed like months, days, hours, until we could see the orthopedic doctor. I knew that no matter how much history I gave him, nothing could prepare Tom’s personal doctor for that first visit. We had seen this particular doctor at SCOI one week before the motorcycle accident. We were preparing to remove the metal from his leg, broken two years prior. At that time we had talked for a while, catching up on years that had past. It was difficult to roll into the office this time. When we tell our story for the first time, we face the tragedy as if it had just happened. Tom always tries to make it easy on the recipient of this terrible news by making a joke or showing off his improvements but the weight of the catastrophe was heavy. This was compounded when we were told that Tom is in no way ready for surgery. He needs to have full range of motion in the shoulders first. There has to be good news here somewhere. At least we have a plan. Tom had cortisone shots in his shoulders again to help with the pain so he can tolerate more range of motion. The therapist thinks if we work hard, we may be ready in 4 to 6 weeks. We just have to find time to fit in more physical therapy. Puzzle de jour. FRIDAY NIGHT LIGHTS Posted Aug 23, 2008 5:10pm We are going on an adventure tonight! First stop, Valencia High School. The Vikings have a scrimmage at 7 PM. One small inconvenience that quad’s have is regulating body temperature. Because of this, we are not sure how Tom will do outside at night, but what the heck. We won’t know until we try, right? Then, if we have any life left in us, we will stop by The Greens to see our friends “Frequency” rocking in the bar. I could never do it alone without knowing that our destinations hold so many caring friends. We love a crowd, maybe we will see you there "Nothing but recovery” Tom Bolewski Posted Sep 5, 2008 6:54pm “I will settle for nothing but recovery” he says. He doesn’t talk much about the injury, but when he does it’s remarkable. Tom is thrilled with his new custom built power chair. I am overwhelmed with relief that he now has suspension. Anyone who has traveled down the 405 in labor, or with a broken bone headed for a hospital knows what the earthquakes have done to the bridges on the 405. Tom used to grimace while the van rattled through the truck lanes that have eroded into ruts. Now he can drive his chair out to the van, up the ramp, and in place for a more comfortable ride than ever. Whew. We have been able to get some more range of motion in his shoulders and he has some new feeling in his wrists and hip joints. Very exciting. Pushing On Posted Oct 5, 2008 10:28pm Wow, I can’t believe it’s been a month since I have posted anything. When I look back, I can’t believe how much I have been blabbing this year. Lately I feel like the Cat in the Hat: standing on a ball holding Thing One and Thing Two in one hand, and a fish in a cup in the other hand. Tom still has a great attitude. Waiting to get his shoulders fixed, he is still in a lot of pain. If the physical therapist is too rough with him he says “Hey, no bruising, no shaking; I’m like a fine scotch.” He will be having a nerve study soon (we hope) to give the orthopedic doctor more information to work with. Tom loves his new chair. He zips around here and when it’s time to leave…he zips out to the van and snaps himself into the passenger spot. He does a great job driving his wheel-chair around here however, he had a spasm the other day and as he says “I hit the throttle with a smack down” which sent Alex and the kitchen table across the room and pinned them both against the wall. A quick 180 and a little “sorry dude” as he sped away and we all started laughing. Seems like we gain momentum, then the pendulum peaks and swings away again. His trach was closed for a month and just yesterday it opened up again. I guess we will need to find an ENT to close it up with a stitch or two. We don’t know what that entails, but it’s officially on the “to-do” list. On and on dealing with the state…oh, how the pendulum swings. I have been waiting for the state to say they will help with his medical expenses and Thursday I got the news. The state will help pay his medical expenses retro back to May. Oh, by the way you will have a share of cost she tells me, $30,000 per year. I made a little noise at that point, like “phuh”. No worries though, because Saturday, three days after it was approved, I received a notice that THE STATE OF CALIFORNIA HAS CANCELED HIS BENEFITS AS OF NOVEMBER. “PHUH”, that was fast. Needless to say, we have an appointment with an attorney that is a Medi-Cal specialist. We have someone coming out to set Tom up with a special telephone. I guess he is going to have to get used to the Madonna headset after all. He still needs special components to use the computer. My grant applications for the FES bike have gone unanswered, so I think we need to research getting him the peddler at least. He won’t be pumping the wheels himself, but it will keep his joints healthy.
I’ve spent a lot of time wondering why it’s been so long since I have felt the need to post something. I really felt like you were all with me this year, keeping me propped up. I think it’s because my best friend is getting better. He is now capable of helping me manage his care, navigate finances, keep the kids in line. He tells me that he tries not to be too needy. He says he knows that he is one sleeping pill away from being pushed out of the van on skid row. I assure him that the thought had not crossed my mind. I still don’t know how this puzzle is going to fit together, but we made it this far and we will continue pushing forward, always.
Shut my hole! Posted Oct 29, 2008 2:41pm I find it difficult not to put a shout out to all of our family and friends every time we see a doctor. I want everyone to come with us. So many hopes come with every new appointment. Tom had surgery two weeks ago to close his trach. After being closed for a month, it busted open for the last time. We laugh about it now but at the time we were so upset . His voice weakened and his neck started whistling and hissing again. I was tempted to get a tire patch kit from the garage and have one of the boys apply it to his neck. Like everything else with Tom, we couldn’t find a doctor that wanted to do the surgery. We actually found ourselves giving a pep talk to one physician “you can do it, you’ll be great” and “it’s OK, were not scared, promise.” Unbelievable. As it turns out, the way it was opened in the first place is the reason it would have never closed on it’s own. Tom is very happy that all the extra holes are now permanently closed. Still no luck on getting his shoulders fixed. Unfortunately there is some discussion now as to whether his problems are caused by the physical damage to the shoulders, or the dreaded possibility of irreversible nerve damage. Maybe this discussion has been going on for a while and we were not willing, or able to hear it. Truth is, were still not. We have walked over too many lines drawn in the sand for us to listen to any BS now. I don’t know what a nerve study is, but I’m pushing like hell to try to get him one. We have seen four doctors this month and the only new advice we have received is to try Long Beach Memorial Hospital. Hum, maybe one more round with the physiatrists at Northridge Hospital for guidance, though I wonder sometimes who is guiding whom? Go Tom! NOVEMBER Posted Nov 19, 2008 12:05pm The summit is only a piece of the puzzle. It’s the icing on the cake and a milestone to celebrate; but you have to take the walk. Tom has the will and the courage, he is resilient and patient. This man is able to be at his best, though the worst has happened and that’s why I love him. NOVEMBER NOTABLES Accomplishments: Tom can touch his index finger to his thumb and he can feel the muscles working all the way down to his tail bone! Firsts: Staples Center for Hockey, thanks to Scott Bosarge Celebration: Kathy & Tom’s wedding in Hollywood Best Day: January 17th; pedaled for 8 minutes on the motor assist peddler Worst Idea: Try to stop him in his chair…best to just get out of the way Best idea: Never turn down an invitation to go out Best Doctor: Dr. Hymes, pain management. Wa-Hoo…no more narcotics! Revelation: No additional trauma while we are continuing to gain function (not fixing the shoulders yet) Our list of things we are thankful for has changed this year. Because this is a holiday of feasting, food is at the top of the list just behind friends and family. We are thankful for the Carl’s Jr. Six Dollar Burger. We are thankful for the food bought, prepared, and delivered to our home by our many friends and neighbors. We are thankful that Danny likes to get up early on the weekends and make breakfast for everyone. We are thankful for Nana and Papa continue to come and cook dinners on the nights I work. We are thankful that Cindy Smith likes to go to the market. We are thankful that at 16 years of age, Alex can barbeque a fabulous chicken, and make delicious brownies. We are thankful that Bill McMillan can pick out a good beer (I never know what to get). We are thankful that Chris and Heather make frequent Wall Mart runs. We are thankful that Susie will be here making a turkey with us on Thanksgiving. Have a wonderful Thanksgiving. *Jim Burrows handed me some photos of Tom's party in the park and I posted them here. If anyone has photos from Tom's events we would love to share them here. Please email me at bolewski@sbcglobal.net. NEWS FLASH... Posted Nov 26, 2008 1:58pm His physical therapist pushed a wheel in front of his chair and he pedaled with his arms for five minutes. Then…are you ready for this? He pedaled with his legs (NO ASSIST) for 20 minutes! it was wonderful to see his body working. He said is felt SO GOOD to see his legs and feet pumping that wheel again. WE ARE THANKFUL! Posted Dec 10, 2008 11:08am Tom has met with his new trainer at Gold’s Gym in Northridge. Taylor Isaac has a completely different approach to healing than any physician or therapist we have seen yet. He is an Exercise Physiologist, was named ACE Trainer Of The Year, IDEA trainer Of The Year, and 2-Time MET-Rx Worlds Best Trainer. Tom’s improvement after just one day is truly remarkable. It’s amazing what he has done with his hands to release the muscles that were bound and pulling his skeleton out of whack. He is sitting taller and straighter and can’t slump his shoulders forward if he tries. Amazing. Taylor thinks we should get a standing machine right away. He thinks that’s what Tom needs right now. He is looking for a used one for us. Tom is sore this morning but he says “If it’s just work that needs to be done, let’s get it done”. Onward! Posted Dec 27, 2008 5:58pm A quick update: We had a fabulous Christmas Eve at our home. Our family and friends came with dinner and desserts so it was very easy and fun to be all together. The boys made us breakfast in bed and we had Christmas morning together upstairs as you can see in the photos. As we were wrapping up and getting ready to move Tom back down stairs he scared us all by having a seizure. Thanks to the fast work of the boys and the neighbors, we had him down stairs and ready to go as the fire department was rolling up. It was not a grand maul seizure but he was unresponsive for a total of about 45 minutes, then another hour to regain his memories of the Christmas festivities. Just when we thought we had him back he had another while in the ER at Henry Mayo. He was transferred to Northridge Hospital and spent two uneventful nights there. He is home, he is tired, and he is resting. He has been released from care to get right back on track with his physical therapy and training. A small brain fart or a step toward total recovery? We had a glimmer of light, literally. This morning he had some slight vision and light sensitivity in his right eye. That was a very exciting moment. The doctor seemed to think that is was just more seizure activity, so we are debating on whether or not we like this doctor. We tend to stick to the people who stay positive with us…Tom says it’s all part of his plan for total recovery. Onward! A New Year! Posted Jan 1, 2009 12:25pm Happy New Year! We are so happy it’s a new year. I’m enjoying the holidays a little more this year because of the feeling it gives me that near and far, we are all connected. (I also get that feeling on facebook, next stop…myspace and a page for Tom) What a wonderful world and group of people. Tom sure snapped back fast from our Christmas Day episode. Seizures are something we have no experience with. We appreciate those of you who called and stopped by with guidance the following few days. We have fabulous neighbors. Once again dinners showed up at our door, phone calls and visits bringing us guidance and support, and last night…champagne before everyone left for their evening celebrations. We actually made it out to a New Years Eve party. Ah, the last event of 2008 that I was skeptical of our ability to attend. Tom slept 16-18 hours for four days but had a full workout with Taylor Isaacs at Golds Gym in Northridge on Tuesday. This was followed by 40 minutes on the stationary bike with Debbie at physical therapy. He actually said the words to me (I knew they were coming) “I want to live at the gym”. So, as many times as I have made that New Year’s resolution, this year it has Tom’s will behind it pushing it forward. All of Tom’s energy will be going toward recovery so all of my energy will be going toward getting him everything he needs, and getting him all the help he needs to achieve. What do we have planned this year? We are going to get the front yard done so that Scott doesn’t have to keep mowing down our little lawn of self seeded crabgrass. Since the staffing agency can’t seem to find nurses to staff us, we will be interviewing LVN’s this year (This January, this week). We will be posting his appointment times somewhere so friends and family can see when Tom needs a driver. We are hoping to have another poker tournament this year so that Tom can keep up his training sessions with Taylor twice a week, and possibly a golf tournament so we can keep nurse Wilson on to help Tom with his morning routine. Because there is no gym available for Tom, we will be committing our efforts to assist Aaron Bakers and Laquita with their goals of opening CORE facilities. I’ve posted their mission statement and if you have a minute to read it you will know why we have hitched our wagon to their cause. Mission Statement:
It is C.O.R.E.'s belief and enduring philosophy that the risk of secondary complications and degenerative changes that typically follow disability may be prevented and/or significantly reduced if exercise became an important part of the daily routine of every disabled individual following the release from medical intervention. Additionally, the concept of extended care through specially designed exercise programs is critical for continued improvement in functional movement and independent skills, ultimately enabling the affected individual to return as a productive member of society. C.O.R.E. is committed to changing perceptions regarding the ongoing treatment and management of catastrophic injury and chronic conditions. C.O.R.E. is a state-of-the-art facility, equipped with unique and specialized equipment, providing low cost integrated, structural, personalized and progressive evaluations, treatment plans, and education to help improve function, independence, and self-efficacy. It is our goal to provide special need individuals the opportunity to improve the quality of their life by opening C.O.R.E. facilities, which are not only feasible but accessible, in every major city nationwide. AaronBakers.com Look what a year can bring! Posted Jan. 16, 2009 Huge milestones! Tom said it was amazing to feel his shoulders come up out of the water as he STOOD UP in 3 ½ feet of water at physical therapy. It takes all of his strength and concentration but itʼs really something to see. Besides moving furniture around the house he can now raise his arms up enough to turn off and on the light switches. Taylor Isaacs put him on the NuStep yesterday (a recumbent cross trainer) for the first time, something Tom has been looking forward to. It took everything he had to go five minutes but you know Tom, he has already set goals for doing 10 minutes by next month. As the anniversary of Tom's accident nears, my mind spins. The events, the people, the milestones, the setbacks, the education. The fundraisers, the gifts, the dinners, the cards and letters, friendships and the partnerships, The New Beginning. Thank you for praying with me, learning with me, staying with me through an unbelievable year. To celebrate life one more time we will be rolling down to LaCocina at Seco and Copperhill on Tuesday January 20th and hope our friends will stop by for a toast, or a hug and a smile and we can marvel once more on how good life can be and the greatness all around us. Anything is possible, act accordingly!
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