For all of you looking for information on the golf outing/dinner benefit, attached at the bottom of this post is all of the information in Word Document form. For all of you looking for information on the golf outing/dinner benefit, attached at the bottom of this post is all of the information in Word Document form.
http://getwellsoonjay.files.wordpress.com/2011/07/jjm-golf-benefit-flyer-sponsor-2011.docx
http://getwellsoonjay.files.wordpress.com/2011/07/donation_letter-2011.docx
Hello Hello one and All!
The holidays were good to all of us, and I hope they were wonderful for all of you as well. Jay was able to come home for good on Thursday December 23rd and we enjoyed a wonderful Christmas. Jay was a good boy this year and Santa took care of him as he got an abundance of presents, but I think the best one was being able to share his Christmas Eve and Christmas day with his family.
On New Year’s Eve Jay actually attended a party with his friends and went to the ball drop downtown next to his apartment. He was adamant that he wanted to stand for the midnight count down and with the help of his friends he was able to do it. His progress has been phenomenal and we could not be more proud of him.
Jay also loves living back in his apartment on Washington Street, but without the therapy 5 days a week and the plethora of nurses to tend to him, Jay seems pretty board. He does have a 24 hour care provider with him, but how much sitting and watching TV can one person do? We have gotten him back on his laptop and cell phone to encourage him to contact people and start surfing the web where he left off. We are hoping to have him start writing so messages to people on here, but that may take some time. He has been resistant to spending long periods of time typing. Not that I can blame him haha.
His therapies are three days a week, the schedule runs Monday, Wednesday, and Friday mornings until about 3:00/3:30 in the afternoon. These are the same therapies he was receiving while he was at ECMC, however it being outpatient now he has different doctors and therapists, and the exercises and sessions are now intensified to compensate for them not being 5 days a week.
Jay has been making progress with his therapy since being home, his new doctor told us and him that we have been babying him a too much and he is letting himself become reliant on other people. With how much Dad forces Jay to work out, I can’t see how we baby him, but I suspect Mom has something to do with that 
haha. The doctor told Jay to suck it up and stand up from his wheel chair without help, just his cane and legs. Jay was able to stand up twice unassisted before being too tired to get up a third time. Jay coming along very much, and though it is slow and grueling, the progress is there every session.
I will keep updating as new things emerge, and just to keep everyone in the loop on how his living back at his apartment goes. If anyone would like to visit, as said in my previous posting, anyone and everyone is welcome, just please call first to be sure Jay will be there.
Thanks everyone, and God bless!
Chris
Hello All, Happy Holidays and glad tidings to everyone from the Musialowski Family.
Well for Thanksgiving last month Jay was able to come home on a limited basis and enjoy time with our family. He came home for dinner, we watched a movie as a family, and enjoyed hanging out back at home instead of being stuck at the hospital. Jay was in his glory smiling, joking around, being sarcastic, and quoting movies like the Jay of old. He really has come such a long way it is amazing.
Unfortunately his visit was only for a few hours as he came home around noon and had to go back to the hospital at 9:00 on Thanksgiving. The next day our family tradition is to go shopping for Christmas, and we had full intension of bringing Jay with us, even if only for a few hours. To our surprise when we got to the hospital we found out that Jay was so exhausted from his fun night on Thanksgiving, he went right to bed after his therapy haha. He wanted to come, but he was just worn out from all the excitement the day before.
Since then he has been plugging away at his therapy and really kicking butt. I will come back to this later.
In some wonderful Christmas news, Jonathan will be officially released from ECMC this week Thursday the 23rd and allowed to return home! This news couldn’t be happier since he will now be able to spend the holidays comfortably home with us and not have to return to the hospital at night like he did on Thanksgiving.
This has been a very long road for Jay and us all, he is being released exactly 300 days since his admittance to the hospital on that terrible day of February 27th. No one is more excited that Jay that he will be leaving with us in time to enjoy this most joyous holiday, and he only needs to go back to ECMC for therapy.
So the logistics of the move are as follows:
He will be moving back into the apartment that he and I shared prior to the accident, 501 Washington Street, Apt. 905, Buffalo, NY 14203. This is because of the lack of wheelchair accessibility at my parent’s house. Being at the apartment he will be able to go between rooms without stairs and have full access to anything he needs. He will have 24 hour nursing care to help him stay on track with his medication and tend to his needs, but thankfully he gets to be comfortable in his old apartment and not be stuck in the hospital. We welcome people to come by and see Jay, but we ask that you clear it with Mom, Dad, or me so we can make sure he doesn’t have too many visitors at one time. I can be reached at 716-207-2426.
The good news keeps on coming….
In preparation for this move back home, the doctors have been reducing his medication levels and taking him off several of the things he has been on. Jay has been on about 12 different medications with a variety of purposes ranging from ones designed to stimulate brain activity, to ones which suppress seizures, and anti-biotics to prevent him from contracting infections. These medications have been reduced to about 6 and they are all in lower doses than they were a month ago.
For the past few months we have seen Jay has become more chatty and started to show signs of being back to the Jay we all know and love, but this reduction in medication has lead to increased awareness and really brought back his fun sarcastic personality. He constantly has his nurses, therapists, and doctors laughing with his sense of humor and sarcastic responses.
One amazing turn that came when the medications were reduced was that he now has started to move his left leg. Initially it was just slight movements, but for the last week he has been walking using both legs in therapy with the help of a walker and a therapist holding him up. He isn’t strong enough to hold all of his own weight, however with help he has been walking laps with breaks between equaling about 100 yards during his therapy sessions.
These steps are phenomenal and really have been inspiring to see, we all knew Jay was strong, but when I saw him walking with that leg the first time I couldn’t help but tear up. Jay has been an amazing inspiration and he keeps fighting every day. Every time someone comes into the hospital room he asks Dad or I to help him get out of bed or out of his wheelchair to help him show off that he is now walking.
I will continue to post updates as new things emerge and Jay progresses in his therapy. I am sure that by spring he will be taking his best shot at getting back on the baseball field haha.
I wanted to also take this time to thank everyone again for the constant support, encouragement, the donations that have been made, and the visitors who come to keep us company at the hospital and say hello to Jay. This support network has given us the strength to be there for Jay and the doctors and nurses have commented that they have never seen such an incredible outpouring of support for a patient they have had.
I just can’t express how touched my Mom, Dad, and I are every day with how much love and support we have received from so many different people. I feel like this entire year has been a season of giving and love where my family has been embraced by so many.
Thank you all from the bottom of our hearts, and have a happy, healthy, and safe holiday season!
Merry Christmas and Happy New Year!
The Musialowski Family
September 19, 2010 – From Chet Musialowski
The month of August was an eventful time for Jonathan.
In July and the early part of August, Jay began preparing for the golf tournament. This preparation included a great deal of physical therapy effort to enable him to get out of his wheel chair, into a car and onto a golf cart.
The therapists at ECMC did a truly marvelous job of helping and encouraging Jay to stretch his efforts and achieve the necessary movements to accomplish the physical transitioning.
At the golf outing, over one hundred and fifty five golfers and dinner attendees, we had a day of fun golf and an excellent dinner. Jonathan was able to attend and with a well choreographed schedule, he was able to ride through the course of players and visit with many as well as rest and be at the dinner and auctions.
Jay had a smile from ear to ear as he was visited by many of his friends. As the day came to a close, a tired but happy young man was whisked away on a return trip to ECMC.
On a personal level, the family Musialowski would like to say “Thank You” to all of the attendees, the sponsors, Rothland Golf Course and our extended family of helpers.
Thank you to:
Dinner Sponsors:
Check-In Sponsors:
Drink Cart Sponsors:
Driving Range Sponsors:
Lunch Sponsors:
Hole Sponsors:
Donors:
Continued 10/14/2010
The gradual expanding of Jay’s ability to move since the Golf outing has been very gratifying.
Throughout the months of August and into September, Jonathan has achieved breakthroughs in swallowing and eating to where he can now have almost anything to munch on. The ability to swallow and thereby take deeper breaths has also enabled speech improvement.
Jay is very conversant and his wit has followed, as well as his liners and quips.
Weather permitting, we take him outside for fresh air and sunshine. As the summer turns into fall and the warm to cool, Jay still visits the great outdoors and the air.
Fantasy football is upon us and the Nickel City Football League, founded by Jay and all had its draft and is underway. Jonathan’s team is doing well and he is handling the week to week scheduling of the “Minions of the Muse” roster. Thanks to brother Christopher and Paul Snyder for help in set up, execution and continuation of Jay’s team. Chris too has shouldered the League Commish duties with Jay’s input.
Our Bills have had a non-Opening salvo of wins, probably due in part to Jay’s non-appearance at the “Ralph” Doctor’s orders……..
In late August & into September, Jay began to stand and with the wonderful folks at ECMC ‘s therapy gym, he began to do the “J – Muse Schuffle”. You would be so proud of the efforts of this young man. On a daily basis he has worked hard to relearn the art of standing up and moving around.
Think about when you were a year old or so and began to stand up, fall, stand again and ultimately walk. I don’t know about you but this writer cannot remember much past a very blurry 4 year old remembrance.
Think about it anyway because our guy has had to re-learn this simple task. Learn it he has and now you almost can’t keep his butt in a seat. Jay wants to stand up and show that he can. Plus, those wonderful therapists have as of a few days ago been working on his left side and there has been movement in his left hand. The index, middle and ring fingers are now moving. The thumb too is showing cooperative signs. Jay has been excitedly boasting of the movement and demonstration the touching the above mentioned three fingers to his left thumb followed by open and closing the hand.
Progress!!!!!!! Just this week, our “One More” time guy has had a graduation to a bit more leg work with a large and wide walker with which he has been seen in the hallway taking aided steps (with two therapists instead of three) tooling about and smiling.
Our guy is an inspiration to those who watch his efforts. In his visiting with family and friends, he is a conversationalist not too far from the Jay before this unfortunate occurrence.
The next few weeks should see Jonathan improve even more.
More to come…
So there really aren’t a whole lot of new things that have been going on with Jay as of late, but I just wanted to get an update out. I have been slacking quite a bit so here it goes:
Well I will start with what little news I have, Jay has been talking quite a bit and that has been aided with the removal of his trach tube. The doctors had been discussing for about 2 weeks whether or not to take it out and though Dr. Bennett thought he should just remove it, Dr. Palisano didn’t want to take it out. Finally they did agree and the tube was removed last week.
When the doctor went in to remove it he was asked by the nurses if he needed any assistance, and he said no because it is a fairly simple procedure of just pulling it out gently. We learned just how much of a fan favorite Jay has become when, despite him not needing assistance, 7 nurses from both the 7th and 8th floors flooded into Jay’s room to “assist”. They all just wanted to be there and be part of the moment because of how much they have been pulling for Jay and what a big moment this was for him. One of Jay’s nurses was so touched to see his progress that she was crying to see him without it.
Mom was talking with the head nurse, Marcy, and they were talking about how some of the nurses have become attached to Jay and Marcy said “we get attached to the ones we know will make it out of here and get better. We knew when Jay got here that he was young and strong enough and driven enough to fight back and get better. We just love working with people like that and we become very attached to them.” She then went on to say she has never seen a family like ours with so many close friends who are at the hospital every day supporting Jay, re-enforcing what he has done in therapy, and helping one another have the strength to help him.
In my opinion these statements from Marcy really are a testimony to how amazing all of you have been in supporting my parents and I in this difficult time. I just want to take this moment again to thank you all for everything. Jay has gotten better thanks to his determination and everyone’s support, love, prayers, and all the contributions we have received.
So back to Jay, he has really started to talk more now that the trach tube is out, but that’s not to say he wasn’t talking plenty before. A week or so ago the nurses were talking to Jay and asked him “what kind of car does your mom drive?” Jay answered, “She used to have a Mustang, but now has a Sebring”. They then asked “what kind of car does your Dad drive?” Jay answered, “A Polish piece of crap.” This had the nurses laughing so they called Mom and asked what he drove. When she told them a Cadillac they laughed even harder.
So Jays definitely talking more, but he doesn’t talk with everyone, it seems to be more my parents, myself, and some of his very close friends. I think he is self-conscious so he isn’t really being vocal to everyone. His voice, which a few weeks ago started out as a mere whisper, has grown and at times it sounds very close to Jay’s normal voice. He usually whispers because it is easier for him but when I force him to speak up he projects pretty well and sounds good.
In therapy Jay has been getting worked very hard and he is pushing to get better to the point where he can come to the Golf Outing on August 15th. He really wants to be there to drive around with Dad and I and be able to see everyone. We are very optimistic that he will be able to come out, but we can’t promise anything. Jay has been a machine though working with his therapists and has made great progress with his muscle building, he has started to be able to drink and eat soft things like mashed potatoes and pudding, and he has started to move his left leg a little bit. Jay’s use of his left leg is minimal but he still is doing it. Any progress is good progress, unfortunately he still won’t use his left arm and any time someone touches it he grabs them with his right and makes them move away from it.
Well this has been another edition of GetWellSoonJay.info, I hope you have enjoyed hearing some news on our boy. He is getting better and things are progressing nicely.
Please keep in mind that the Golf Outing is on August 15th and we are still accepting reservations. I was unable to upload the fliers so here is the information:
The Outing is a best ball tournament and it is at:
Rothland Golf Course
12292 Clarence Center Road
Akron, NY 14001 (I had accidentally said Arcade in my previous post)
Hole Sponsor: $40
Check in Sponsors: $100
Driving Range Sponsors: $100
Drink Cart Sponsors: $200
Dinner Sponsors: $200
Golfing with a Cart and Dinner: $85 per person
Attending for Dinner only for the non-golfers: $40
Check in is at 11:30
Shotgun Start at 12:30
Silent and Chinese Auction and dinner to immediately follow golf; non-golfers are welcome to attend.
For the registration sheet, of the flier please email me at getwellsoonjay@gmail.com. I have had numerous sign ups via the email, and I am checking it frequently to get people signed up.
Thank you all again and God bless,
Chris-
Hello All,
I have attached two forms to this post which include the flier for the Golf Outing and Registration From. Please feel free to distribute them to anyone you know who may be interested and let me know if you would like to attend the event.
The event is Sunday August 15th , tickets are $85 per person which includes golf, cart, and dinner. If you would like to come just for dinner the cost is $40. The fees for sponsorship are included in the fliers.
For more information or to confirm a foursome please email me at GetWellSoonJay@gmail.com.
Thanks everyone!
Chris~
Good Morning All,
So Jay has been doing much better since my last update. He has been moved to the 8th floor where he has resumed a more steady and rigorous regiment of physical therapy, speech therapy, and work with all of the nurses and doctors. He has made some very nice strides in the right direction and really has us all very encouraged.
On Thursday of last week Jay walked up and back twice on the therapy rack. He still doesn’t have use of his left arm and isn’t moving his left leg much, but the therapists would move it in front of him for him and he was able to use it and bring his right foot around. He has gotten stronger and stronger every day and now is able to hold himself up with his right leg for 30+ seconds at a time. These are all steps in the right direction and really are encouraging as to the long term outlook of his recovery.
Jay being stubborn and determined has served him very well in this difficult time. He has met with some setbacks, but his determination has pushed him through. Every day after several hours of therapy he still asks Dad and myself to keep working him out and doing exercises with him to improve his strength and range of motion. The difference in his strength is amazing. Just 2 weeks ago I could lean my weight on his leg and have him push me, now he is too strong and kicks me across the room. I think it’s him paying me back for teasing him so much haha.
Jay still isn’t speaking but he is beginning to mouth words to us and the nurses. He hasn’t had very good chemistry with his speech therapist, but we are hopeful we will get someone in there that he will take to and make more progress. They have been feeding him apple sauce and trying to work on his swallowing, which seems to be coming around a little bit so again we are encouraged that he is getting back to a level where our communication with him won’t be limited to writing on a white board.
A report on the chances of him needing more surgery, Dr. Bennett informed us that he doesn’t believe Jay will be needing a shunt for the fluid in his head, at least not for a while. That is something he will revisit in about 3 months to see where Jay stands and what the fluid pressure levels are. This is great though because Jay won’t need to be laid up for more time on the 7th floor. He will be able to continue with his therapy and keep working hard and trying to walk.
I think the best part of Jay’s day is the daily walk around the building in a wheelchair with Dad. He and Dad take the 1 mile stroll (Dad measured it with his car, not surprisingly) around the building so Jay gets some fresh air and sees life outside of the hospital. Jay usually will fall sleep on the walk, but it’s a great thing for him to get out, smell the fresh air, feel the sun on his skin, and enjoy the summer like he loves to on the diamonds. Dad gets quite a work out too.
Well that’s all for Jay, but I do have an update for the Golf Tournament:
The outing will be held on Sunday August 15th at Rothland Golf Course in Angola. Sign in will start at 11:30 with a Shotgun start at 12:30 SHARP!!!! If all goes according to plan, we hope that Jay will be on hand to say hello to everyone in person. Obviously that is depending on his therapy and condition.
Dinner and Dessert will be served at 5:30 along with prizes, raffles, and auction items.
Prices are as follows:
Dinner No Golf – $40
Single Golfer – $85
Foursome – $320
Hole Sponsorship – $40
Check-In Sponsorship – $100
Driving Range Sponsorship – $100
Drink Cart Sponsorship – $200
Dinner Sponsorship – $200
If you are interested in playing, being a sponsor, or making a donation please contact me at GetWellSoonJay@gmail.com. I will be posting the fliers and entrance forms in the next day or to.
Thank you all so very much for your continued support of Jay throughout his recovery.
Sincerely,
Chris Musialowski-
Good Afternoon Everyone,
Okay so remember how I said Jay would not require surgery? Just to show you how quickly things can change, on Wednesday of last week Jay was operated on to put a drainage tube in his head. The tube was put in because a CAT Scan showed that the fluid building had doubled in size from two weeks ago to last week. The tube went in around Midnight Tuesday night. The procedure was done to allow the fluid to drain, and then the doctors proceeded to flush saline solution through Jay’s skull to rinse it out and allow them to test the fluids for germs and bacteria. The drain was removed last Thursday.
Some fun news to Jay having the drain put it was that now he has a side mullet instead of the mullet on the back of his head. When Dr. Bennett shaved Jay’s head, he only shaved the half that needed to be operated on. Therefore Jay is sporting a very unique and humorous hairdo.
Since that minor setback, Jay has been doing very well and Dr. Bennett is hoping to have him moved back up to the Physical Therapy floor on 8 by the end of this week or start of next. They are doing a test today which tracks an injection if isotopes throughout his body to look for brain chemistry and test for some stuff I didn’t fully understand haha. Hopefully Jay will be able to be moved upstairs so they can start to work him out much more rigorously.
Jonathan still hasn’t begun to move his left side, but he seems to have full feeling in he left leg. He feels pain in it and will move his toes, but he isn’t moving it at will. Jay’s left arm is an issue because he hasn’t started to move that at all on his own. We are hopeful that once he is moved upstairs they will be able to make more progress.
On the front for the Golf Outing, the date is set for Sunday August 15th. The cost is still being worked out with the course, but it will be held at 2:00 at Rothland Golf Course in Akron NY. I will post a full article on the details for teams, sponsorships, and donations by this weekend.
Thank you all for your diligent following of this blog and for your concern about Jay. Your prayers and support have helped my family, and most of all Jonathan in this incredibly difficult time. Thank you very much for everything and keep praying. Everything you’re doing is working.
Thank you all and God bless.
Chris-
Hello All,
I know it seems like there has been a ridiculously long draught since my last article, but unfortunately that was due to a technical issue. I sent the two previous articles to Joe as I have been since my Laptop crashed and he never received them. We are still tracking the problem down as to why he isn’t getting emails from me, so I have made other arrangements on getting the articles up and ready to view.
So new news about Jay:
Well I posted the article from last Wednesday where I told you that Jay would likely require 2 more surgeries. That is not looking to be the case anymore. Dr. Bennett found that Jay’s body, in combination with several very powerful antibiotics, has been able to fight off the blood infection and he is doing much better. Over the next few days they will be doing a few more tests to look for a few more possible infections, and if he clears those he will be moved up to the Rehabilitation floor.
Dr. Bennett is still weighing out the possibility of putting a shunt into Jay’s head for drainage but it looks right now like he will hold off on that and give him some more time to recover.
In some rehabbing news, Dr. Bennett, Dad, and I have been helping Jay stand up a little bit. It’s not for more than 30-40 seconds at a time, but we are trying to get him used to being upright and start getting those leg muscles working. He has struggled and these are literally the first steps of many more for his recovery, but he is on that road. Jay still isn’t moving his left arm or leg, but he did start to wiggle his left toes a little bit and he has pain in his left shoulder. Any feeling is better than no feeling.
Jay has been very depressed lately because of his current situation. He is mentally coming around and is very sharp, which is amazing. The downside is he is realizing that he can’t move his left side and he is frustrated at his current position. He and I talk and he asks me to help him get better. I tell him that I will do anything in my power but the recovery is mostly up to him. He needs to work out hard and start forcing himself to do the things we all take for granted. Speaking, swallowing, standing, and moving are all things he is going to start to relearn. With the support of so many wonderful friends and family, I know that he will get back to full strength and be kickin’ my butt in golf in no time.
Thank you all for your support and let me know about the golf outing if you are interested. (Details still to come)
Chris-
(A slew of updates due to technical problems with the site, hopefully back to normal shortly.)
Well it certainly has been a while since I have written an article. I’m sorry I have been away so long, but there really hasn’t been any dramatic news, but I will update you all and hopefully make you smile a bit.
So Jay has been doing alright, slow and steady improvement with his communicative skills and motor function with his right side of his body. He has been writing up a storm and even mouths a lot of words in an effort to talk. Since his surgery they have uncapped his trach so even if he could talk, he would be unable to. I think that once he is moved back up to the rehab floor and has the trach capped again, he may start to speak a little bit. I have a feeling once he starts talking he is going to talk for about 2 days straight with the amount he has to say.
I brought the Wii to the hospital a few days ago and we have been playing that with Jay. He is getting better and better at bowling and his motor skills will keep getting better as he plays games like that. They also have been getting him out of bed and making him stand using a walker. Though he still can’t move the left side of his body, he did take two steps the other day with the walker. All great first “steps”, forgive the pun, on his road to recovery.
Since his surgery Jay has been fighting off an blood infection which just won’t seem to go away. This unfortunately has kept him on the surgical recovery floor as they need to keep a constant eye on him. They would like to put a shunt in his head to help drain fluid, however with his infection, the shunt could become contaminated, so they are going to have to hold off on that surgery. They may perform a different surgery in the meantime to help drain the excess fluid and allow the doctors to inject medicine more easily into his head to protect it from the infection.
For those of you keeping track, that means that Jay will likely require at least 2 more surgeries before leaving the hospital. The doctors are trying to work on any and all solutions before operating, but there is still a very good chance that it will be necessary.
On more of a feel good side of things, Jay has continued his walks outside with Dad. Yesterday Dad went up to the 8th floor and borrowed a wheelchair so he could take Jay for a walk around the grounds and enjoy some of the fantastic weather we have been getting. Jay loves it when Dad takes him for a walk and gets some fresh air. I can only imagine what it’s like being cooped up for so long in a small hospital room. As Jay has put it in writing to us “this place sucks!!!!”
Jay’s nurses apparently didn’t appreciate the humor of Jay’s mullet as I did and they shaved it off last week. I was very disappointed because I never got a picture of it to post on line. Let me tell you though, he was rocking it hard!
I hope this has been an entertaining read, I will keep updating as we find out more about Jay’s infection and what is going to be done.
Thank you all for all of your support through this difficult time. My family and I are truly blessed. Thank you.
Chris~
