NEWS ARCHIVES: January-August 2010
20 AUGUST 2010
The 2nd Annual 'Strides For Stroke' Turkey Trot is fast-approaching!
Thanksgiving is Thursday, November 25th this year. We hope you will join us first thing in the morning for a FUN 3K walk or 5K run to benefit the Foundation. Those who joined us last year will surely tell you that the event was a blast. What better way to start your Thanksgiving holiday than with friends, family, turkey hats and costumes, and a little exercise in the crisp autumn air!
Online registration will be available mid-September. Registration and check-in will begin at 7:00 a.m. Thanksgiving morning, and the walk/run will begin promptly at 8:30. The event will begin and end at 11 Sherman Street in Lexington.
NOT A RUNNER? BECOME ONE!
No, really! You can do it! Now is the perfect time to start a jogging schedule. Make our event your goal, and run for your health AND a good cause! This training schedule will have you "couch-to-5K" in 8 short weeks. The 5K course we have charted is a mostly flat, scenic loop through Lexington's neighborhoods, making it an ideal run for all abilities.
Of course, you can always choose to join us for the 3K walk, which winds you along the Minuteman Bikeway and up through the scenic Meriam Hill area of Lexington.
NEW PHOTOS ON THE 'GALLERIES' PAGE
My dad has been hard at work creating a brand new album of never-before-seen photos that chronicle Steven's journey to date. It is a must-see. The captions he has personally written detail the emotions and reality that we all felt. Please take a moment and view the album now!
12 AUGUST 2010
WHAT A DIFFERENCE A YEAR MAKES
THANK YOU GOLFERS!
Our 2nd Annual 'Strokes Fore Stroke' golf outing was a huge success! A great time was had by all, despite the oppresive heat! Many thanks go out to all of our sponsors, donors, golfers, volunteers and Red Tail Golf Club. The day was fun, start-to-finish, and even included one of our golfers getting a HOLE IN ONE at hole 11! Congratulations, Bill Leuci!
If you missed the event this year -- we're already planning ahead for 2011!
The highlight of the day was when Steven arrived for the luncheon. He was given a much-deserved standing ovation. Check back here soon for some great photos taken by STHSF photographer, Steve Hill (aka, Dad). Again, many thanks to everyone!!
23 JUNE 2010
LAST CALL FOR GOLFERS!
There are 4 more days until our golf outing! So far, we have 80+ golfers registered! Thank you everyone!
TRYING TO BOUNCE BACK
Steven is better since his latest seizure, but he is still a bit 'off' and shaken up. He thought he was having another seizure last Saturday, June 12, because his leg was trembling. After another trip to the ER, they were sent home and left with unanswered questions. On Monday, my mom arrived and noticed that Steven was still not acting himself, and the decision was made to bring him into Boston to see his neurologist.
The consensus is that, since his last seizure, they have increased his Kepra (anti-seizure medicine). When Steven's leg started trembling, he was in fact about to have a seizure. The medicine counteracted the seizure, but not fully, and the result was the trembling. Although this means the increased dosage is working, it still has left Steven anxious, uncomfortable, scared, and with no appetite. We hope that things even out and that he goes back to feeling confident again!
The neuorologist ordered an EEG (to monitor Steven's brain waves for seizure activity) and Tanya took him to that appointment on Thursday. They had him sleep for 90 minutes and used a strobe light at some point. The results of the EEG will not be in until early next week.
We continue to take each day as it comes. Tanya reported that Steven is halfway-himself today. Thank you for your continued support and prayers! According to www.strokesafe.org, "The most common seizures resulting from strokes are those that occur weeks or months after the initial event. When a region of brain tissue dies during a stroke, it begins to degenerate into scar tissue after a few weeks. The dead area contracts into a fibrous nodule of scar tissue. The presence of this scar tissue acts a provocative irritant to the normal neurons adjacent to it, precipitating a seizure months or even years later."
A reminder that there is just one week left until our golf outing on Monday, June 28th! It's not too late to sign up and join us or donate something to our raffle! Thank you!
Check out this picture of one of Steven's friends, George O'Neill. George is sporting his monkey shirt and standing in front of the Wrigley Building in Chicago. I love that you all still send me your "Here a Monkey, There a Monkey" photos! Keep them coming! Thanks, George!
7 JUNE 2010
ANOTHER SCARY DAY
On Wednesday June 2nd Tanya got a frightening call from Lisa, the aide. She told Tanya that Steven was not acting right. He did not answer her when she walked in, know who he was or who she was. Tanya spoke with him on the phone. Although he was talking, he was not making sense. Tanya and Lisa made the decision to call life line and have Steven taken to the Milford Hospital ER.
Tanya was at work in Boston and hopped in a cab and raced home. She called my mom, Marilyn, and she also went out there. Arriving in the ER, they found Steven alert but a little beat up. He had a bump on his head and had bitten his tongue and cheek pretty bad. They determined from all his symptoms and these marks that he had had another seizure. Due to him hitting his head they had to do a CT scan to rule out any bleeding. Luckily all came out clean. They had a hard time getting an IV into him and his veins kept blowing. They said this was due to his prolonged use of coumadin. Tanya says he now looks like a human pin cushion and is severely black and blue all over.
The ER Doctor consulted with his neurologist and they decided to up his seizure meds again. He now has an appointment mid-July to go see the neurologist to discuss the future.
Tanya says all has returned to normal and Steven has been enjoying his weather station that he got for Christmas. He has been monitoring all the weekend storms along with radar on the internet. He loves thunderstorms and was very disappointed that they eluded Bellingham all weekend.
On a therapy note, Steven did receive his botox May 28th and we are waiting for this to kick in. Liz, his OT, says she already can see slight improvement in his elbow mobility. It takes around 4 weeks to fully reach the full potential,so stay tuned for progress. His speech is improving nicely. Tanya and my parents tell me at points in time it's like carrying on a normal conversation. He still has difficulty finding some words and severe difficulty with his motor skills to pronounce others.
For PT, we have stopped his regular sessions at Spaulding with only a few scheduled for updates. He uses his leg Bioness daily to tweak his gait. He is up to walking 2 laps on the track across from their house daily. He is working on gaining endurance and strength now. As of June 15th he will have to go to self-pay for his OT sessions as the insurance allowance will have run out. We want to thank all our supporters for the opportunity for us to be able to do this.
Press, Press and more Press! Steven and Tanya have been featured in the Miami Herald, and on the local Miami channel 10. These stories were done while they were in Aventura last month. They also shot an in-house documentary that will be shown on the local TV station within the Aventura Hospital. Several more press releases and articles are being worked on and we will post them as soon as they are available.
Read it Here
Watch it Here
Spaulding Network has launched a new forum on facebook called Find Your Strength: (www.facebook.com/findyourstrength). Steven's story is featured on here as a success story of a young stroke survivor. This forum has discussion boards for anyone who wants to post their questions and stories. Tanya and Steven plan to be very active with this. Spaulding is also having a Stroke Program Patient Reunion on August 8th. Steven and Tanya will be attending along with my parents and her parents. Steven's story will be taped then, along with all the other survivors and will be featured on the Find Your Strength forum.
The Stroke Foundation bracelets have been a big success. They are still available if you want to purchase one. Email firstname.lastname@example.org if you are interested! They are $20.00 per bracelet, plus $2.50 if you need the bracelet shipped. You may pay online using the "donate" tab, or mail-in a check to the address on the "donate" page.
1 JUNE 2010
In 2 days, it will be exactly 1 year since Steven suffered his stroke. I thank you for continuing to follow Steven on his journey. Our golf fundraiser is in 4 short weeks on Monday, June 28th.
WE NEED RAFFLE ITEMS!
This is my completely shameless appeal to all of you for help in making our upcoming 2nd annual golf outing a huge success.
At last September's golf outing (which was super fun by the way) the raffle items alone brought in approximately $5,000.00 in raffle ticket sales! Having a large selection of various items available for the golfers to oooh and aaah over after they play their 18 holes is key to the success of our outing.
Do you have something you could donate?! Maybe you own your own business, work for a company that would be willing to donate something, or simply have unused gift cards or unopened gifts laying around your house (what a better way to re-gift?!). I would truly appreciate anything you may be able to send my way and will happily repay you with hugs and happy thoughts.
Email me@ STHStrokeFoundation@Gmail.com.
COME GOLF AND SEE STEVEN!
We also still need some more golfers to join us on the course! Steven and Tanya will both be in attendance! Our parents and Tanya's parents will be as well. The Red Tail course in Devens, MA is beautiful. Please consider joining us!
Don't be shy -- ask your company to sponsor you for the day on the course! Many companies look for opportunities to give back like this. We offer various sponsorship levels that all include some form of signage. We can also include promotional items in every golfer's welcome bag.
ALL INFO ON THE EVENTS PAGE.
Thank you so very, very much!
One year ago today, Steven was released from Spaulding Rehabilitation Hospital in Boston and stepped into his home in Bellingham, MA for the first time in approximately 75 days. Half of the top of his skull was still stitched into his abdomen, he needed heavy assistance when walking, and his speech was limited to very few words.
Today, he stands before us tall and proud. His head shows the fading scar of his skull reattachment surgery, he walks without assitance, and he recently sang "happy birthday" to himself at his 35th birthday celebration with his family. All of this is a direct result of his hard work at physical, occupational and speech therapy, coupled with a few amazing medical advancements and technology and the emotional and financial support of this Foundation. We are a team - Team Steve - with Steven as our Team Leader. Together, his continued progress is unlimited!
We enjoyed a wonderful birthday gathering at our parents' house - Tanya's mom and dad were able to join us from upstate New York as well. We took a family picture (as many of you know, this is never an easy task - photo above), and mom cringed as Steven opened his birthday present from me: The Family Guy Volume 8 DVD. Steven also showed us how he has gained great range of motion in his right arm. He is indeed inspiring.
Sunday was a special day. Spaulding Rehabilitation Hospital in Boston hosted a reunion day, and asked Tanya to give a speech (photo at bottom of post). The day was emotional, as Steven was reunited with his Spaulding roomate, Don (photo below). Everyone was crying; Don had never seen Steven walk unassisted. Tanya's speech was wonderful and it was really great for Steven to be surrounded by other young, stroke survivors. One of the inspiring individuals Steven and Tanya were able to meet was Jason Crigler, a stroke survivor and musician (photo above). Spaulding is a special, amazing place. We are very lucky to live in Boston, so near to such great medical facilities.
If you haven't done so already, check out our galleries tab. You can click a link to our new picture gallery, where you can view more photos of the Spaulding event. Also, at the bottom of the page, you can link to Spaulding's 'Find Your Strength' Facebook page, where you can read summaries of the event. It is exciting to see the news and press releases begin to fill up that page. Our future is limitless it seems, just like Steven's progress! Thank you for your continued support!
6 AUGUST 2010
HAPPY 35th BIRTHDAY, STEVEN!
...And here's to the next 35! We all love you very much and are amazed by all the progress you have made. Last year we celebrated your birthday at Spaulding - this year you are HOME!
I had Dad email me some old birthday pictures (you can thank me later.) In the one above with both of us, it looks like you got a super cool hammer. I look forward to celebrating our birthdays together again tomorrow! (Need another hammer? I haven't bought your gift yet). I love you, big bro! Happy birthday!
14 JULY 2010
Steven is having a great summer. Lately he has had a positive shift in motivation and attitude, becoming more eager to work hard at his therapies. Imagine Tanya's joy when she walked into the house last week to find Steven playing the Wii independently in the living room! It is empowering for Steven to be choosing activities that will help him progress -- so often it's someone else telling him what to do and when to do it. It seems that Steven is now really taking an active role in his journey to recovery. Way to go, Steven! Keep up the hard work!
On Friday, Steven began water therapy at friend Linda Rainey's pool. The Rainey's, who own their own personal training business, are generously donating their time, services and pool for Steven's use. They are even providing transportation for him! Steven loved the pool; it's a great way to provide more therapy in a different setting, preventing boredom and working different muscles. And who wouldn't want to spend some time in a pool these days?! Thank you so much to the Rainey's.
If you are interested in learning more about Linda and Glenn Rainey's personal training business, contact them as indicated below. You won't regret it!
3P Training, LLC
78 Howard Street
S.Easton, MA 02375
Here is a wonderful video produced by Robyn Kane and Aventura Hospital in Florida. It is the final piece of the public relations package that Robyn put together for Steven's reunion to the hospital. You won't want to miss this video: http://www.youtube.com/watch?v=Ad5fdJJp1vU
Also, slowly but surely we are updating our 'Galleries' page, which will house all the video, audio and photographs that are Foundation-related. Please be sure and check that page often, as there will likely be some never before seen items that you will enjoy! Thanks!
5 JULY 2010 Please take a moment to check out these photos from our 2nd Annual 'Strokes Fore Stroke' golf outing! Thanks to my Dad for being such a wonderful photographer.
Happy 4th of July to everyone! Steven and Tanya hosted a nice party at their home; they have the best view of the fireworks in Bellingham from their front yard!
30 JUNE 2010
LACE UP YOUR SNEAKERS!
It's not too late to register! Use the "Events" tab above and register online! We have over 30 amazing raffle items this year (did someone say autographed Tedy Bruschi football?! Oh, yes, that was ME! I can also tell you that we have a high-end 2010 Nike driver, a Wii, and much, much, MUCH more!).
If you were interested in SPONSORING this event, the signage has all gone to the printer as of yesterday. Please consider being a sponsor in 2011!
For your convenience, here are the directions to the Red Tail Golf Club. The shotgun start is at 8:00 a.m. We look forward to seeing you on Monday!
18 JUNE 2010MORE GREAT PRESS!
Read it Here
Watch it Here
28 MAY 2010
WANTED: RAFFLE DONATIONS AND GOLFERS!
25 MAY 2010
HOME SAFE AND SOUND!
21 MAY 2010
ANOTHER GREAT DAY!
25 MAY 2010
HOME SAFE AND SOUND!
21 MAY 2010
ANOTHER GREAT DAY!
Today everyone got a little much-deserved rest and relaxation. Enjoy these pictures taken today at Hollywood Beach and the hotel pool, and yesterday at the big celebration.
Below: Notice the monkey t-shirt on Manon, far right
Below: CEO of Aventura Hospital, Heather Rohan (in pink), and the head of the ICU, Kathy Taylor.
Below: The emergency room staff that worked on Steven when he first came in. On the right end is Robyn Kane, the PR person who coordinated the whole visit.
Below: Dr. Santiago Figuereo, the neurosurgeon who saved Steven's life.
Below: Robyn Kane, PR person who coordinated the entire visit.
20 MAY 2010
AN EMOTIONAL DAY
Everyone got to Florida safe and sound yesterday afternoon. Steven did great! Today they woke up early and headed to Aventura Hospital for what turned out to be one amazing, emotional day.
The event was bigger than they expected. Steven was all smiles. Tanya's speech was beautiful. There wasn't a dry eye in the room.
Dr. Figuereo, Steven's neurosurgeon at Aventura, undoubtedly saved Steven's life. Steven, Tanya and my parents heard stories recounted about how he took risks and exhausted every possible procedure in order to give Steven this second chance at life. When other doctors may have given up on Steven, Dr. Figuereo pushed on. Words will never express our heartfelt appreciation and gratitude for Dr. Figuereo.
Steven is doing great! He is walking all over the place and talking up a storm. This trip seems meant to be: a homecoming, a reunion, closure. An emotional journey for all involved.
19 MAY 2010
LEAVING ON A JET PLANE!
And they're off! Today is the day that Steven, Tanya, Marilyn and Steve fly down to Aventura, Florida for the big reunion and emotional celebration with the staff that saved Steven's life. Check back here often; I will try and post daily updates!
9 MAY 2010
UPDATE FROM TANYA
The following is a personal message written by Tanya:
A look back.
As we come upon the one year anniversary I have been doing a lot of thinking about the past year, the ups, the downs, the good, the bad and the gauntlet of emotions run from one end to the other, thankfully coming out to now where things are good! A year ago we were so excited to be going to Jamaica and having a villa with our own pool and butler. How a dream vacation became a nightmare still runs through my mind almost every day. To look at the picture here of Steven just after his surgery next to the one from a lazy Sunday morning it’s hard to believe it is the same person. With the love of everyone around him he pulled through even though the doctors were not sure if he ever would recover. Today I look at a healthy, happy Steven who is making progress every day. The "legness" had now become a permanent member of the family, and bits and pieces of the old Steven are coming through every day! We still have a long way to go, but the healing will never stop and we will continue to do everything in our power to get Steven the things he needs to make a full recovery. He will be getting his next round of Botox when we get back from Florida and the dosage has been increased. Everyone involved in his arm and hand therapy expect this to be a very good thing. The first round at the lowest dose helped a lot and he made some big strides forward with regaining range of motion in his arm. The increased dosage should propel him forward again.
It also has been a busy time getting ready for Florida, I have been working with the PR people down there, telling updates, giving information and just planning out our time in Aventura. We fly out on Wednesday on Jet Blue from Logan and arrive in Aventura around 2pm. Wednesday morning we have the reception breakfast where he will meet the whole team, Doctors, nurses, aides, physical and occupational therapists and anyone involved with his case. They are going to play the stroke foundation slide show there too so everyone can see Steven before and after. Then, being stroke awareness month they are having a big fair put on by the hospital and I am going to tell "Steven's story". We will then be given a tour of the hospital and Steven will be shown where he was when we were down there.
Hopefully after that we will have a little time to relax, maybe a memorial visit to the cafeteria with our VIP gold cards for a bit of lunch. (yes we had VIP gold cards 25%off) Around 5:30 we are going to meet Manon LePage for dinner. Manon was the Angel that popped in every day and made us that unbelievable homemade dinner (we were living on lean cuisines). Thursday we have our morning free (maybe get Steven to take a dip in the pool) then we meet at Dr. Figuereo's office (he was the neurosurgeon) for him to examine Steven and to spend some time with us. He can't believe the miraculous progress from such a dire situation. Then we will be having a press conference and interviews with any newspapers, radio stations etc that wish to be there. The ABC affiliate in Aventura has shown some interest.
Also the Aventura hospital has its in home health channel and they want to do a piece on Steven and have it run on the channel. They will be having a film crew follow us around while we are there and also we will tell Steven's story again and then it will play. This is very exciting.
May is stroke awareness month and I have done my duty to become more aware. I have dug and researched and gotten some more information on the Protein C deficiency (a clotting disorder that makes the blot clot) that Steven shares with his mom ,sister and many other of his family members. 1 in every 200-500 people have this. While most people live without incident, the ones that do have problems usually develop DVT’s (deep vein thrombosis) which is treated by Coumadin for 3-6 months to stabilize the clot. Little known fact, clots never go away, they stabilize so they won’t break off and go to other parts of the body. In dire cases like Steven's he has deep clots in both legs he has filter in his lower vena cava to capture any pieces that may break off so they don’t go to his heart or lungs. We are so thankful for this protection. This deficiency has been known to cause venous strokes, while mostly in women, very rare in men. Steven's stroke was a venous stroke and the doctors believe that the Protein C deficiency was most likely the cause of the clot that caused the hemorrhage.
I have finished the design of the Steven T. Hill Stroke Foundation stroke awareness bracelet. Myself, Steven's mom and Kelly are all sporting them and I have gotten rave reviews on mine and even a few pre orders. They will be offered here on the website for $20 plus S&H of $2.50. The standard size is 7 inch but if you need a special size you can email email@example.com and request a different size. I hope you like it as much as I do!
Stay tuned in two weeks we will be having a huge posting of a link to all photos, videos, news casts etc. from our wonderful adventure back down to Aventura.
Love and Thanks
28 APRIL 2010
(Picture shows Steven at therapy last week working his right hand with the Bioness. He was able to take the cone and give it back. It was awesome!)
Steven, Tanya, and my Mom and Dad are leaving on a jet plane… they are heading to Aventura, Florida at the end of May! You may remember that Aventura Hospital is where Steven was for a full month after suffering his stroke in Jamaica. There is no doubt that the doctors at Aventura saved Steven’s life.
May is National Stroke Awareness month and Aventura Hospital has invited Steven to be their honorary guest as they celebrate this important month. There will be a luncheon and Tanya will give a speech. Media of various sorts will be present for photos and interviews with Steven and the doctors. Most importantly, this visit will be Steven’s chance to shake the hands of those that saved his life. It’s hard to believe it has been almost one year since Steven’s stroke. Look how far he has come! He amazes us every day.
Tanya reports that there has been a great response to the news that they are going back to Florida. Everyone down there can’t wait. Steven is very excited, although he is understandably a little nervous about flying but has been appeased since Dr. Kaufman got him an Ativan prescription. Steven has been logging on to ‘World of Warcraft,’ an online gaming site that he was very active in before his stroke. He has been playing a little and having Tanya type things to his fellow guild members who have been ecstatic that he is back on. This is another positive step forward towards his old life.
Therapy has been going well and the Bioness devices are proving to be a great enhancement to his program. They have added an additional speech session per week to his therapy in order to really concentrate on getting Steven able to communicate better. He is making great progress! You can tell when you talk to him; he is using his words more and his articulation is getting much better. All the therapists agree that Steven needs to practice his therapies at home. This is difficult sometimes when he is alone, but it is a goal for him. My Mom mentioned that at speech therapy the other day, he told the therapist that he understands everything, but that his brain just can’t get the words to come out. He also told her that he thinks he will be able to return to work someday! Yay, Steven!
Tanya and Steven have been continuing to try and settle back into a “normal” routine. She wrote this to me: “We had a BBQ a few weeks back with Brian McAllister and his wife, Sarah, and it was the most normal thing we have done so far and Steven did very well with the conversation and interacting. It was awesome!”
People continue to ask questions about the Foundation by noticing our t-shirts or jackets and we are gaining many supporters and getting lots of good feedback. We are currently in the process of exploring the potential of adding a new tab on here that would give everyone the resources necessary when helping someone who has had a stroke. We have all learned a lot in this process and would love to share it! Also, Tanya has started to design a special Steven T. Hill Stroke Awareness bracelet (did you know that she designs and makes jewelry?!) and she says it’s coming out really, really well! Hopefully, we will offer it on here when it is completed!
17 APRIL 2010
FLORIDA PRESS RELEASE
Steven, Tanya, Marilyn and Steve head down to Aventura, Florida in late May!
Everyone is very excited for this trip back to the hospital that saved Steven's life. Please take a moment to read the press release that has been distributed in anticipation of this honorary event!
12 APRIL 2010
2nd Annual STROKES FORE STROKE Golf Outing
Monday, June 28th, 2010
8:00 a.m. Shotgun Start
Red Tail Golf Club
We hope you will join us at this 2nd annual event! We had so much fun last year and we expect an even bigger turnout this year.
Red Tail Golf Club, designed by renowned golf course architect, Brian Silva, is a 7,000+ yard, par 72 course in nearby Devens, MA -- just a short drive up Route 2.
The course is crafted from a site of great natural beauty. It flows over rolling wooded hills and meanders through numerous streams and ponds.
11 APRIL 2010
Steven is doing great! We had a wonderful Easter at our parents' house in Lexington. Steven showed off his arm and leg Bioness machines. Very impressive!
23 MARCH 2010
I must let you all know that I apologize for the delay in updates lately. Instead of my goal of weekly updates, they seem to be bi-weekly updates. Life is getting the best of me I think and despite my hardest efforts, it is often difficult to sit down at my computer for any significant length of time! I appreciate you all logging on and checking the site. I know how hard it is to wait in the 'unknown' of space and time. I am always doing my best and I thank you for hanging in there with me! With that said... so begins a VERY long and VERY overdue update on Steven!
The arm bioness is going really well! Steven is doing both Spaulding Framingham and Wellesley until next week and then just Framingham with an ocassional update at Wellesely after that. He is learning to extend his elbow and gain strength in his tricep muscle while getting flexion in the fingers. The fingers are doing great with the Bioness! We are seeing good results. He cannot yet flex them on his own yet, but that could come in time. He is up to two 70-minute sessions a day with the Bioness arm stimulation and working toward two 90-minute sessions a day.
Speech is coming along well too! Steven had a great session Friday where some really complex sentences were coming out. He still has periods of confusion at times and can't pull the words out or make a decision, but that is getting better too. It is really important that Steven be able to tell people to speak slowly and clearly so that he can comprehend and respond. Danielle is going to be working with a "World of Warcraft" magazine (something Steven was really interested in prior to his stroke) and will have Steven to tell her stories about the characters and try and read the magazine itself. She is trying to get him to write, read, and speak better; all are important because if he can't do one of them, he could rely on another.
Physical therapy continues to go really well too. He is up to 165 pounds on the leg press and 7 minutes on the elliptical machine. He needs work on his endurance but once the nice weather gets here (and stays!) he can get out and take walks with Tanya and that should help.
Given Steven's success with the arm Bioness, he has also been trying the leg Bioness (the L300) with surprisingly good results. His therapist at Wellesely is Anita Thompson and she and Tanya both agree that Steven can really benefit from this too. Steven did not think there was a difference and then Anita took off the Bioness and he walked and looked up at Tanya with a look that said 'oh yeah!' and really realized what a difference it makes. It uses weight bearing sensors in the sneaker to trigger the muscle response in the calf to lift the toes and ankle to make him kick his knee out and walk ankle-to-toe. It is really another neat device!
We are working with Bioness right now to get a rental leg unit for a couple of months because he probably will not need it permanantly. He will wear the device all day with a break during lunch to give the skin a rest. This will hopefully re-teach his leg to walk normally. It's not that he can't do it now, it's just that the brain knew it did not want to weight bear on that leg so it shut off and now we have to retrain it that it is strong enough to carry out the functions. Another thing is, when walking, his knee has a delayed bending reaction due to slow impulses. This should get much better in time with stimulation and lots and lots of walking.
In terms of Steven's recent seizure, he seems to be doing well. There have been no further seizures and the doctors are going to keep him on the updated anti-seizure dose and just watch him.
The Botox is at its peak right now and you can really see it in Steven's fingers! They are so loose now and in his elbow and calf also. He has much less tone there. He has to go in soon for a reevaluation to let the doctors see how he is doing. He got 200 (120 in the right leg and 80 in the right arm). We have seen good results with this, so they can go up to a maximum of 500 which is one and a half times the first dose -- so the possibilities are there! Very exciting. He can't have any more Botox until mid-May however.
Steven is now preparing his own breakfast most days and getting himself ready for therapy on his own once Tanya leaves for work. Lisa only comes now for about 3-4 hours on Wed and Thursday to take him to therapy and then do some home exercises. We want to help Steven to feel independent and to learn to do things on his own. He is doing very well with this and likes it a lot. Tanya comes home most nights and he has the "Nessie" on and is doing it himself. To this Tanya says, "No surprise there -- it's a gadget so of course he likes it!"
Steven and the leg Bioness, 3-19-10, (above) and arm Bioness (below).
5 MARCH 2010
"NESSIE" IS IN THE HOUSE!
Steven received his Bioness arm stimulation unit, which he has named 'Nessie', last week. He had it programmed specifically for him at Spaulding/Wellesley and will use it twice a day, for 50 minutes at a time. I will be sure to keep you all posted with what we predict will be some wonderful improvements in his right hand! Steven will not continue with his regular OT sessions at Spaulding/Framingham, but will instead continue to work with Spaulding/Wellesley during this Bioness trial period. His PT and speech therapy will still be at Spaulding/Framingham.
Tanya's parents were in town this weekend and, combined with the Spring weather, they all enjoyed themselves immensely. Steven took in the fresh air with them as they took a walk in the park yesterday. They walked approximately a half mile, with only a few short breaks!
MARCH IS DVT AWARENESS MONTH
In case you are unaware of what DVT (Deep Vein Thrombosis) is, I urge you to visit this website and learn a bit about this sometimes fatal, yet often preventable, condition. Steven has Protein C Deficiency, as do my Mom and I. We have learned the warning signs of blood clots and want you all to be as aware of this serious issue. Please take a moment to read about DVT and spread the word!
26 FEBRUARY 2010
A SCARY NIGHT
Steven had a seizure last night at 7:15 p.m. Tanya had just gotten home; they were simply sitting at the table eating dinner when it occurred. Tanya said it lasted only a few minutes. Quick thinking as she is, she pressed Steven's LifeLine button, and in seconds the voice came over the speaker. They called the ambulance a mere two minutes later.
Steven and Tanya rode to the Milford Hospital ER by ambulance. He was admitted, an IV was inserted, and he was almost immediately declared "stable". He knew what his name was and where he was. They did a cautionary CT scan, to be sure he had not had another stroke. After the scan and some bloodwork came back fine, he was soon after cleared for discharge.
My Mom, obviously scared -- as we all were, rushed to Milford as soon as Tanya called. She arrived just as Steven was being admitted to the ER. Steven was doing well, but he was a bit confused, and understandably scared. The doctors and staff at Milford Hospital were wonderful. They increased his anti-seizure medication and assured us that Steven would be okay to go home. The three arrived home in Bellingham at around 10:30 p.m. My Mom stayed overnight.
Tanya consulted with Steven's neurologist (Dr. Pilgrim at Faulkner/BWH) today, and he assured her that this was to be expected. Many stroke patients do experience post-stroke seizures. The brain has been damaged by Steven's stroke; scar tissue has formed. Steven, in his remarkable progress, is making new pathways in his brain -- his brain is making new connections to his body. Unfortunately one of these new pathways hit a patch of the scar tissue, and the brain reacted -- ending in a seizure.
Although Steven's anti-seizure medicication has been increased, Dr. Pilgrim warns us that Steven very well may have more seizures in the future. However, he recommends we continue about the schedule we have with Steven. He should continue his scheduled therapies, and he can even still be left alone for a few hours before Tanya gets home at night. After all, he says, millions of people live with seizure disorder every day. Life must go on. We have explained to Steven that he must call LifeLine if he thinks he has had a seizure, or if he thinks one may be coming on.
About LifeLine: We are all so very impressed with the service of LifeLine. The Foundation gladly covers Steven's monthly expenses for this important service, and last night showed that it is worth every single penny. They were there for Tanya and Steven within seconds, and they even followed up with my Dad later on that evening at home in Lexington. LifeLine has all of Steven's medical information in front of them, so they are able to relay all that information to the ambulance staff as they are on their way to get him. Thank you, LifeLine!
Steven, we are all with you on this long and often bumpy journey. It is mostly forward-moving, but it is certainly an uphill battle. Keep fighting. Can you hear us...we're behind you chanting: Go, Steven, Go, Steven! We love you.
23 FEBRUARY 2010
STEVEN'S DOING GREAT!
Steven has been doing well with the Bioness arm stimulation. He has endearingly named it "Nessie". He will get full training and programming on it this Thursday. He is still in the trial portion of the therapy. If all goes well, he will be cleared for full use of it! Steven also received Botox injections in his right hand and right leg, which should help with his movement and the gait of his walk. A quick internet search returned many articles written on the effectiveness of the Botox therapy. You can read one here if interested: Botox and Stroke Patients. Using these cutting edge therapies is very exciting to all of us.
The therapists are now encouraging Steven to simulate many of the movements he does at Spaulding by taking on new tasks at home. These include feeding the cats, getting his own cereal in the morning, and using the microwave. Steven's one-to-one care is also lessening. My Mom is now able to leave Steven by himself for a bit of the afternoon until Tanya comes home. He takes a nap after his therapies, and she leaves him with the phone, Tanya's number, and his LifeLine. He's been doing great on his own for those few hours and I think he is enjoying a bit of independent time. Keep up the hard work, Steven! We're all so proud of you.
The picture is of Carroll at Spaulding-Wellesley, working with Steven and "Nessie".
Steven had a wonderful weekend visiting with Tanya's sister and her family. The photo shown is of Becky, her husband Jon, and their super cute son, Liam. You may recognize Liam as our picture perfect model for the monkey t-shirts!
20 FEBRUARY 2010
A BIRTHDAY WEEKEND
Happy Birthday, Tanya! Tanya's sister, Becky, is in town with her family from upstate New York for the weekend to visit and celebrate with her and Steven. Enjoy your weekend!
Thank you everyone for all the positive reply emails I received from my recent email to our mailing list. It's nice to have such a great personal connection with so many of you. Our mailing list has grown to approximately 700 supporters! If you would like to be on the list, please fill out the submission form. I promise not to flood your inboxes; I aim to send email sparingly. If you did not receive the latest email and have already submitted a form, please let me know by email (STHStrokeFoundation@Gmail.com). In the busy last 9 months items may have been lost here and there. I apologize!
While I'm on the subject of boasting about our 700 mailing list recipients, I thought you might find some of these statistics interesting also:
- We have had over 31,000 views of this website since it's launch, a mere 5 months ago
- An average of 150 people view the website each day, with Mondays being the busiest
- The website was designed and created by 3 talented individuals who donated 100% of their time, and continue to help maintain it and work on other marketing-related ventures for us
- The Foundation Board currently has 5 members
- Many of our event volunteers have helped at more than one event; many of our supporters have attended more than one event
17 FEBRUARY 2010
THANK YOU CHANNEL 5!
Channel 5 (WCVB-TV Boston) did a wonderful update on Steven on February 15, 2010. If you missed the broadcast, you can watch it here.
Tanya said that they were invited by Spaulding to attend an event on May 20th, where they would meet Tedy Bruschi! Unfortunately, this is also the day when Steven, Tanya, and my parents will be down in Florida for the luncheon at Aventura Hospital. Spaulding assured her that there would be similar opportunities in the future, and that they wanted to use Steven's story to help educate people about young stroke sufferers. That is one of the goals of this Foundation, so I am thrilled to say the least!
WELCOME NEW SUPPORTERS!
Due to this latest broadcast, we have gained new followers of Steven's journey. Welcome! Please check back often, as I do try and update the 'News' page once a week. Our 'Events' tab will soon be filled with our 2nd Annual 'Strokes Fore Stroke' golf outing as well, and we hope this year will be even bigger and better than it was in September!
We are in the process of archiving older posts and bringing over much of the content from the earliest days of Steven's stroke, where I posted on a Blog site. In the meantime, you can visit the Blog site, and read the earlier posts: www.STHStrokeFoundation.blogspot.com.
NEW SHIRTS ARE A BIG HIT!
I had new t-shirts made that have the logo on the front pocket and say "TEAM STEVE" on the back. Everyone loves them; I've already had to order more! It's nice to see people supporting Steven! Please continue to spread the word.
6 FEBRUARY 2010
WATCH STEVEN ON CHANNEL 5!
Channel 5 (WCVB-TV Boston) will be filming an update on Steven and is set to air it on MONDAY, FEBRUARY 15th! The update will be on their 5:00-6:30 p.m. broadcast. Be sure to set your DVRs and TiVOs and mark your calendars so you won't miss it!
In other news, Steven met with the Spaulding Wellesley professionals who gave a big thumbs up to Steven trying out the Bioness for additional hand rehab! We are very excited for Steven to have the opportunity to try this cutting edge technology...thanks to your generous donations! Surprisingly, Botox hand injections are also in Steven's future. This should help with his tone.
This photo (below) shows Steven at Spaulding-Wellesley trying the Bioness on! (You will note his genuine smile and, of course, a monkey tee!)
Steven continues to excel in his therapies, surprising everyone each day. His speech is improving by leaps and bounds! I particularly notice that he is gaining confidence in his speech -- something so important and good for Steven's overall recovery!
You can see below that Steven continues to enjoy playing the Wii Fit! Keep it up, Steven!
26 JANUARY 2010
JANUARY PERFORMANCE EVENT A HUGE SUCCESS!
A big thank you to Pamela Caira of Step-By-Step Dance Studio in Waltham, MA for an amazing night of dinner and dancing! Thank you also to all the dancers for a fabulous performance that included styles from hip-hop to tap to belly dancing! Lastly, thank you to the 350+ supporters who attended the event, participated in the numerous raffles, and helped raise over $12,000.00! I am in awe of the generosity within our community. Step-By-Step Dance Studio provides a variety of dance styles and classes within their 3 studio spaces. Please check out their programs here: www.stepbystepinc.com.
Check out these pictures from the event. Take special note of the amazing cake, made by one of the attendees! I didn't know our website homepage could be perfectly replicated in cake! I will get the talented baker's information and post it here. You will want to order from her for your next event!
Look for more photos from this event later this week!
SPITTING OUT SENTENCES
I called Steven over the weekend and was so happy to hear him spitting out whole sentences! He said, "Tanya, Kelly wants to talk to you!" SAY WHAT?! I was so excited I wanted to hear that mundane sentence again and again! Way to go, Steven. Keep up the great work!
You can see a picture of Steven's current OT at Spaulding-Framingham, below. She is going to largely responsible for reccomending the Bioness arm therapy for Steven.
CHANNEL 5 IS CALLING US AGAIN!
Channel 5 called Tanya recently and wants to do an update on Steven! This is great news! We are happy to have established a relationship with the wonderful newscasters at channel 5 shortly after Steven arrived at Aventura Hospital in Florida. Thank you once again to Foundation Media Director
Lori LoTurco for that! The exposure is wonderful! I will keep everyone posted as soon as Tanya hears more!
22 JANUARY 2010
ANOTHER FOUNDATION EVENT SOLD OUT!
Thank you supporters and Pam Caira of Step-By-Step Dance Studio for what is sure to be a wonderful and fun evening tomorrow! I am so happy to hear that this event is SOLD OUT! Both my Mom and Dad will join me as we enjoy a wonderful performance and share in the spirit of support for Steven!
If you missed your opportunity to join us at tomorrow's event, check back here often for the next event! THANK YOU!
17 JANUARY 2010
"I RESOLVE TO..."
Do you have a New Year's resolution?
This year, mine was easy. I have resolved to take a step back from the hustle and bustle of it all and see my life through a clearer set of glasses. Sure, this may seem easy enough. But with two young children and a puppy at home, things can get pretty hairy really quick. Far too often I am too focused on the tiny details to appreciate the bigger picture. Jessie will want to snuggle up and read a book, but Danny's naptime is soon approaching and the puppy is annoyingly clawing at the rocking chair. Add to that, the Christmas decorations need to come down and my closet needs reorganizing. I get caught up in all those things that don't matter and overlook the one thing that really should - the missed snuggle time with my daughter.
Steven's stroke has reminded me how precious life is. I resolve to appreciate my family more and focus on what truly matters...not the laundry, not the dishes, not the chewed up rocking chair. This is easier said than done and I have not been completely successful yet, even though it's only 16 days into the New Year. Perhaps we can help each other slow down and ignore the slushy mud/snow/ice combo that was just tracked across our recently cleaned wood floors and appreciate the smiling children that caused that mess - so excited to tell of their recent outdoor adventures that they couldn't wait to take their dirty clothes off in the foyer.
The picture of my children, Jessie and Danny, was taken yesterday on Plum Island, just a few minutes from our home. The weather was absolutely beautiful and we feel so fortunate to live so close to the beach! It was an opportunity for me to work on my resolution and really take the time to look around and realize how full my life is. The beach can somehow put things in perspective it seems, at least for me.
Tanya would like everyone to know how appreciative she is of all of you: Steven's Supporters. She says, "not a day goes by that I don't thank God that we have this [Foundation] or I would be going crazy right now. I want the best and every option available for Steven and we can get it."
Steven only has 100 PT/OT sessions allowed by insurance. He will run out of the insured services by May, but thanks to the support of the Foundation, he will be able to continue them if needed!
In PT, they are now working on Steven's gait and trying to get him to bear weight on his right leg. He is very strong and did 10 minutes on the elliptical to the amazement of the PT staff on Friday.
OT is working with the EMS (electric stim) to help him self-feed with his right hand and do other tasks. Tanya is looking into the "Bioness" for Steven to use. Technology is amazing! The Foundation would purchase this for Steven if his therapists agree it would be beneficial.
For his speech therapy, Steven has a picture book with pictures of things important to him and he tells stories in his own words to his therapist. His sentences are getting longer and more understandable. He told Danielle that he owned a camaro Z-28 supercharged car...and those were his own words! She was amazed.
The pictures of Steven walking were taken yesterday. Steven and Tanya enjoyed a nice walk outside in the beautiful January air!
LAST CHANCE FOR TICKETS
Please join my Mom and I on Saturday, January 23rd for a wonderful fundraising event! Tickets can be purchased only by calling: 781-891-5678. There will be great raffle prizes, a yummy dinner, hours of dancing and a performance with special guests! All proceeds will go to the Foundation. The event takes place in Newton, on the Waltham line (near Russo's). I hope to see you there!
9 JANUARY 2010
NEW YEAR, NEW START, NEW GOALS
HAPPY 2010, EVERYONE!
This year is off and running...in the right direction! Steven has been in great spirits and continues to work hard at his therapies. The therapists at Spaulding, Framingham have set aggressive goals for Steven and won't let him give up! Steven works so hard!
I hope you enjoy some of the pictures on here that Tanya has taken. Danielle, in the green shirt, is Steven's speech therapist. The physical therapist is Ashley.
For those of you who have been to one or more of our fundraising events you know that one of our favorite raffle items is the Nintendo Wii. We give one away at almost every major event. You will notice in one of the pictures above that Steven has just recently begun using his Wii at home! We were all so thrilled that he was interested in this again! There is really great research out there on using the Wii with stroke victims showing that it aids in their recovery immensly, which is one of the reasons we try and give one away at our raffles!
Steven has also been showing huge improvements in the new year. Just yesterday, he woke up and the first thing he showed Tanya was that he could move all of the fingers on his right hand! Tanya tells me this comes and goes, but she has been seeing it more frequently lately!
Steven's OT has started him using EMS (electric stim) treatments for his right arm, wrist and fingers. OT feels that this will work, but Steven has to continually work his arm/hand/finger for at least six hours a day! Since this is where he sees the least improvement he is reluctant to do it. All therapists feel they are already seeing vast improvements and if he continues to work hard he will continue to make great strides.
Steven also continues his regular medical check-ups, which include trips into BWH. He recently saw his hemotologist, who said Steven was doing great and decided he didn't need to be seen again for another six months! Great news for Steven, who still does not like to ride in the car.
This May, Aventura hosptial, where Steven was in Florida, is hosting a luncheon in conjunction with National Stroke Awareness month. The luncheon is in honor of Steven! Tanya, Steven and my parents will fly down there and meet with the team of specialists who no doubt saved Steven's life. Everyone is very excited for this trip!
I want to take a moment to remind you about the two fundraisers we have going on in January.
First, on the 'Events' page you will find information regarding a dinner dance performance event that is happening very shortly, on Saturday, January 23rd. Tickets will not be sold at the door, so you must call Pam (all details on the 'Events' page). My mom and I will be there and would love to share in the fun with you! A huge thank you to Pam Caira, my former dance teacher and then boss, for coordinating this lovely night of winter fun. You won't want to miss this! Pam puts on a very professional performance. I can't wait!
Second, 'Art in Australia' has been extended...for all of 2010! I now know for sure that Craig Goldsmith, the generous photographer and coordinator of this event, is absolutely amazing! This fundraiser began shortly after Steven's stroke, during the summer of 2009. It was only supposed to be a few months, and I was pleasantly surprised when Craig extended it until the end of 2009. Imagine my surprise when I got word that he would be extending it again...this time for a complete year! There truly are no words to express my gratitude to the Goldsmiths (who, you may remember, were just here on holiday - there is a picture posted somewhere below).
Purchase one or more of Craig's amazing pieces of art from our 'Art in Australia' fundraiser and ALL of the profits go to the Foundation. THANK YOU SUPPORTERS, AND THANK YOU CRAIG!
29 DECEMBER 2009
WHAT A GREAT CHRISTMAS WE SHARED!
We were all together on Christmas day and it was absolutely wonderful! I hope you all are enjoying your winter break as much as we are. Enjoy these pictures and I will "see" you in 2010!
20 DECEMBER 2009
With only a few days left until Christmas, we are focusing on family and faith, and remembering all that we have to be thankful for this year. This year was full of ups and downs, and we look forward to 2010, which we hope will be filled with new beginnings.
My parents have written a letter to you all that you can read below. As you may imagine, there is so much that we want to convey to all of Steven’s supporters, but there are simply no adequate words to express our gratitude. Please take these little notes as our sincere Thank You, and know that they are written from our hearts.
O, CHRISTMAS TREE
Steven and Tanya put up a Christmas tree and are planning to join us at my Mom and Dad’s house on Christmas Day. We can’t wait. See the picture below of Steven standing by the tree! I will do my best to post some pictures between Christmas and New Year’s of our family sharing the special day together.
JOIN US IN 2010
Again, thank you all for your support along this road with us. I hope that you will join us in 2010 for the 2nd Annual Strokes Fore Stroke Golf Outing and the 2nd Annual Strides For Stroke Turkey Trot! Enjoy your winter festivities and I wish you all health, peace and happiness!
JANUARY PERFORMANCE EVENT
I want to remind you all of a very fun evening coming up on January 23rd. Please join us for a night of dancing and raffles, all in support of Steven and the Foundation. The event is hosted by Step-By-Step Dance Studio of Waltham, and will take place at the Post 440 in Newton. The dancers have been busy raising money already! They recently built a monkey hut and sold paper bananas for $1.00 each at the Waltham Common Christmas Tree Lighting on December 4th! Amazingly, these young dancers sold over $200.00 in less than two hours! Please email me for further information, STHStrokeFoundation@gmail.com, or you may call the dance studio: 781-891-5678. (Check out the picture below!)
A LETTER FROM STEVEN'S PARENTS
Dear family and friends,
I wish we could send a personal letter to each one of you this holiday season, but this will have to do for now. We feel so blessed this year to have Steven with us. This is the most wonderful Christmas present ever. We thank you all for your support during the past year. We have a lot of fun events planned for 2010 and we hope you will join us for some of them.
We hope you will take a moment to hug everyone in your family and tell them you love them, as life can change in a heartbeat. We wish you and your families a wonderful Christmas and a happy and healthy New Year.
Our sincerest thanks and love,
Marilyn and Steve
(Mom and Dad)
7 DECEMBER 2009
"LOOK! I CAN MOVE MY THUMB!"
Great news! Steven excitedly showed Tanya over the weekend that he could move his right thumb! This means a new neuronal pathway has formed, allowing the signal from his brain to reach his thumb. This is very encouraging for all of us, but especially for Steven, who hopefully knows that this is directly related to all the hard work he has been putting in at therapy. Way to go, Steven! Keep up good work!
Steven’s insurance will no longer cover at-home therapies. He will now travel to Spaulding’s Framingham site three times a week, where he will receive his physical, occupational and speech therapy. So far, so good! My Mom still cares for Steven on Mondays and Tuesdays, the 12-hour nurse, Lisa, is there on Wednesdays and Thursdays, and Tanya still works from home on Fridays.
KARAOKE AND DARTS TOURNAMENT A SUCCESS!
Thanks to Kate Higgins, Tom Moore, ‘The Times’ Restaurant and Bar, and Steven’s friends and GMO family, the event on Thursday was a huge success! Just as importantly, it was a ton of fun!
Steven made his first appearance out at a social event by joining us at ‘The Times’. This is Steven’s favorite after-work hangout. Of course, everyone was so thrilled to see him. There was so much love and support filling the room. Smiles were all around, and the biggest could be found on Steven’s face. Another milestone in Steven’s journey has been marked. What a night to remember!
You will enjoy some of the photographs below, taken by my Dad. What a great group of people Steven has in his life! Steven’s stroke, although obviously devastating, has had a silver lining: Steven has woven new friendships and everlasting relationships between people in ways that often surmount understanding and defy description. I find myself feeling a part of Steven’s life in ways I never could have imagined; the outpouring of love and the goodness in people warms me; and I am witness to powerful new connections being made. For every new connection that Steven’s brain makes on this journey, a new connection is being made among all of us, which can be attributed to Steven’s silver lining. A lining, which, I am sure, has many, many layers.
AUSTRALIAN MONKEYS...IN THE UNITED STATES!
As you all have hopefully seen on this website, in the newsletter, and in several posts of mine over the past few months, Steven has a couple very good (and extremely generous) friends in Australia. Craig and Kate Goldsmith work at GMO’s Australian office, and have known Steven for quite some time now.
Craig is the mastermind behind our “Art in Australia” fundraiser. A superbly talented photographer, Craig has donated all profits of his website sales to the Foundation since August. The fundraiser continues through December, so be sure to visit his site and make a purchase! You won’t be disappointed! Click here to link to Craig’s website.
Craig and Kate arrived in the States just a few days ago, and one of their first stops was at Steven and Tanya’s house on Sunday. They had a great visit, and my favorite part is that their support is all encompassing – they even wore their monkey tees at the visit!
30 NOVEMBER 2009
THANK YOU, TROTTERS!!
The 1st Annual Strides For Stroke Turkey Trot was a huge success!
Thank you so much to everyone who came out Thanksgiving morning. When I decided to do this event 10 weeks or so ago, I expected maybe 5-10 people to join us. I told my Mom I didn’t care how few people showed up, I would still hold the event. Even she thought I was crazy, (“An event, Thanksgiving MORNING?! People need to cook their turkeys, Kel!”) But I believed in the spirit of the holiday, and with Dan’s support of all my crazy ideas, I knew we could make this a memorable morning.
I never expected 70 (SEVENTY!) of you to join us! Wow! I am still in awe, and it puts a smile on my face to know you all believed with me. I hope you enjoyed yourselves and that you will join us again next year. I promise more ridiculous turkey-ness. Anything for Steven!
TURKEY KING AND TURKEY QUEEN, 2009
We ceremoniously crowned the first place male and female runners by bringing them up on the deck, putting turkey drumstick hats on their heads and awarding them with glittery sashes. Congratulations to Craig Kelley who achieved this honor with a 5K running time of 21 minutes and 11 seconds, and congratulations to Daniela Gallinelli who achieved this honor with a 5K running time of 25 minutes and 7 seconds. We hope you will come back next year and defend your royal turkey titles!
I need to quickly thank my amazing volunteers. A few of them have been to EVERY event, and I couldn’t do it without them. They show up early, stay late, and work hard, all with a smile on their faces. You know who you are – Thank You!
Steven and Tanya joined us in the afternoon for a wonderful Thanksgiving. It was Steven’s first venture outside the house for something other than a doctor’s appointment! We shared with him the details of the morning, and he really got a kick out of looking through some of the pictures that my Dad had taken (a couple are shown below). The day was just perfect start to finish!
A LETTER FROM MOM
Dear family and friends,
What a wonderful turnout for the first Turkey Trot! We can't thank you enough for all your support. We had a wonderful time and hope you did too. Kelly and Dan really did a great job on this one. And Dan is such a good sport to be our turkey. What a guy! We hope you will all join us again next year and bring all your friends. The more the merrier.
Our Thanksgiving Day was so special for us this year. Having Steven at our house was such a blessing. We have so much to be thankful for this year, and having family and friends like all of you is included in those blessings. So, thank you so much. We hope you all enjoyed your Thanksgiving Day with your families.
Our sincerest thanks and love,
Marilyn and Steve
(Mom and Dad)
EVENT ON THURSDAY!
We hope to see you at the darts and karaoke event this Thursday night after work. It is at “The Times” in the Financial District. It begins at 5:00 p.m. Stop by for a drink with us!
25 NOVEMBER 2009
We are gearing up for our 1st Annual Strides For Stroke Turkey Trot tomorrow morning! It looks like we will have approximately 50 participants! I am thrilled with the anticipated turnout and Dan and I have a few things in store that will make this event one to remember!
If you would like to join us, we welcome you to show up and register tomorrow morning. The event starts promptly at 8:30 a.m., so be sure and come early to sign-in and enjoy some coffee! The start and finish is at 11 Sherman Street in Lexington, which is immediately adjacent to the downtown area.
Steven and Tanya will be joining us at my parents’ house after the event for a small family dinner. Needless to say, we are all so excited to spend the day together and share how much we have to be thankful for this year!
I want you all to know how thankful I am for all of you. Your continued support is amazing. I am truly honored to be spending the morning with many of you tomorrow! Happy Thanksgiving!
EVENT NEXT WEEK!
Don’t forget that in just one short week there is another great event you can attend! ‘The Times’ is Steven’s favorite bar in Boston. He is well known there. One of his colleagues has generously coordinated a darts tournament and karaoke extravaganza for December 3rd! Please join us after work for a fun evening! See further details on our ‘Events’ page. (Thanks, Kate!)
19 NOVEMBER 2009
Steven is back in the swing of things! His therapists are thrilled to be back and think Steven looks great and is doing wonderfully. His speech has improved slightly. He is saying short phrases and asking for things without being prompted. Each day he gains more strength and becomes more willing to try "new" things such as standing on his own and doing things without assistance. Throughout his daily progress, he remains the monkey he has always been...after Tanya and my Dad spent half an hour in the garage searching for the starter power cord to the snow blower, Steven walked in and found it right away. He was quite proud!
13 NOVEMBER 2009
Steven was discharged today at 1:30 p.m. He was so excited! My Mom said when she walked into his room this morning he was holding his medicines from the doctor and had a big smile on his face. When she asked him where he was going, he said, “HOME!” and pointed to the door. Congratulations, Steven, on another milestone successfully passed!
11 NOVEMBER 2009
Steven is still at BWH, but they have moved him from the ICU to the general neurology floor. He is doing very well. His communication is already making improvements and they have been doing OT and PT with him. For a few days post-surgery, he had an abnormally high heart rate. They sent him for a pulmonary CT scan and all came back normal. Over the weekend, his heart rate regulated again, leaving us and the doctors relieved, yet still perplexed as to what the rapid, continuous heart rate was all about.
The surgeon authorized him to go back onto Coumadin (the blood thinning medication) while at the same time receiving a heparin drip. They did find a blood clot in his right arm, but so far his brain scan looks great. He will remain in the hospital until his INR (his blood thinness) is at a safe level due to Coumadin. At that time they can take him off the heparin drip and he will remain on the Coumadin, which can be managed at home. There is no way to know how long it will take for his blood to reach the therapeutic level (of 2.0), but we hope he will be able to come home by this weekend!
As you might guess, he is antsy to go home! My mom has been staying with him most mornings, and Tanya has been able to work half days so that she can spend the afternoons and evenings with him.
All of the newsletters should be in the mail by Friday, 11-13-09. If you do not receive one by Monday of next week, and you signed up to be on the mailing list, please do not hesitate to email me: STHstrokefoundation@gmail.com. With so many of you signing up in such a short amount of time, added to the hectic events schedule we have been on, it's quite likely I missed one or two of you accidentally. I apologize if this happened, and want to remedy it immediately! I am so appreciative that you all care enough to sign up for the mailing list!
04 NOVEMBER 2009
SURGERY WAS SUCCESSFUL!
Steven is doing well at BWH. He has been feeling nauseous, so they are giving him some anti-nausea medicine. His pain level is moderate, and is being well managed. His face began to swell last night and he developed a bit of a fever, however the surgeon is not worried about either of these things and tells us they are normal reactions to having his skull piece reattached. Since he is off the very important blood-thinning drug, Coumadin, they are bridging him with Lovenox injections until they can safely put him back on a Coumadin schedule.
Steven is taking his post-op recovery in stride. He is such a trooper! Most frustrating to him at this point is his difficulty communicating. He had made such progress in this area prior to the surgery, and now his brain is having a hard time making connections again. For example his ‘yes’s’ and ‘no’s’ are mixed up. The surgeon assures us that these connections will all come back, and that these side effects are normal and temporary.
The earliest date for Steven’s release would be Sunday, but they are taking it one day at a time. Tanya’s employer, Gordon Brothers, was generous enough to put Tanya up in a hotel last night so that she could be close to Steven and not have to travel the hour+ on the commuter rail to and from Boston. After spending the night in the hospital with Steven post-surgery on Wednesday, she hopefully got some much-needed rest and relaxation last night! Tanya also reports that the BWH ICU staff is excellent! They have taken an immediate interest in the Foundation, and have already signed up for our mailing list!
ANNOUNCING...A WINTER PERFORMANCE EVENT!
Get out your dancing shoes!
As a former teacher at Step-By-Step Dance Studio, I have had the privilege of choreographing for this annual event for five years. Each year, owner and director Pamela Caira generously chooses a different charity for whom to raise money. This year, we are thrilled and honored that she chose the Foundation! Mark this date on your calendars and call for your tickets today!
Pictured are photos from previous winter performance events hosted by Step-By-Step Dance Studio.
04 NOVEMBER 2009
STEVEN'S SURGERY WENT WELL TODAY!
They started the procedure at 10:45, and were finishing up around 2:00 p.m. Tanya and my parents got to see him in the ICU at 3:30 p.m. and said he looked good, but was groggy. I haven't gotten the full details yet, but when I do I will be sure to post them - likely tomorrow at some point.
Thank you to everyone for your thoughts and prayers and genuine caring spirit. We are absolutely thrilled that Steven has climbed this next branch on his way to recovery and are nothing but optimistic for his future!
31 OCTOBER 2009
The following update is from my Mom, who is now with Steven 12 hours on Mondays and Tuesdays…
Steven is improving everyday. He has an alarm that goes off when it is time to take his meds, but he anticipates it, and heads for the kitchen before it even goes off! He is taking his own meds now, and can tell me what they are.
When I am there, I insist we go outside at least once. Steven takes quite a walk, and we stop and pick up the mail on the way in. He has homework and we do several pages a day, along with word games. On some of his workbook pages, he needs to think of simple words, but Steven always comes up with more difficult words. Right now, Steven and I have been working on a really hard jigsaw puzzle. I am the one who complains about how hard it is, and Steven just works on it, like it is nothing. And the brainteaser puzzles he has are really hard! He gets them every time, and there is one called ‘Dot on Dot,’ that I can't even do. Steven does mine after he finishes his!
Working with Steven every Monday and Tuesday has been wonderful. I really look forward to it. Watching Steven improve everyday, step-by-step, day-by-day, is so rewarding. Steven is really invested in his improving too. There is no one that tries harder!
UP AND COMING
Steven’s surgery is in FIVE days!
HUGE thanks to Craig Goldsmith, who has graciously coordinated the ‘Art in Australia’ fundraiser since August. Craig has decided to extend the fundraiser through the end of the year! Thank you so much, Craig! He tells me there will be beautiful calendars available on the site soon, so keep checking! Get ahead on holiday shopping, visit the site, buy some art, and support Steven!
I continue to get registrations in for the ‘Strides For Stroke’ Turkey Trot, which makes me smile. I am really looking forward to this event. I think it is going to be great fun on a day meant for family, friends and smiles. Thank you trotters!
Next week I will announce a new fundraising event occurring in January that I am thrilled about. Get out your dancing shoes and stay tuned for the details!
If you are on our mailing list you will be receiving our first newsletter within the next week or so! I am very excited about this and am so happy to have such a substantial mailing list in such a short amount of time. Thank you all so much for helping this Foundation GROW… for Steven!
Today is Steven and Tanya’s 4 -year wedding anniversary! This year God asked them to come face-to-face with their vows. “For better or worse” is an easy phrase to say; yet to truly live it is an entirely different task. Tanya has shown me that when she held Steven’s hands and looked into his eyes in the church four years ago, she understood the vows she was taking, and has stayed true to them. That means so much to me.
Steven and Tanya’s marriage has not wavered through all of this. In fact, it has grown stronger. Each day when they wake up next to each other and prepare to face the day, they are reaffirming their vows to one another. They are an inspiration to me and this morning I took a moment to really look at my family and realize how lucky I am, and realize that the vows we have taken are truly sacred, and there are days when we are called upon to live the phrases we spoke.
“In sickness and health, for richer or poorer…” I am thankful for each and every day that passes, and thankful that my brother found someone who will love him unconditionally, ‘til death do them part. Happy Anniversary, Steven and Tanya! Here is to many, many more.
THE MAGIC WORD IS..."PATIENCE"
I am disappointed to tell you all that Steven’s surgery has been delayed…yes, again! It is now rescheduled for November 4th due to some sort of clerical error. If there’s one thing we’ve learned through all of this, it’s patience! Steven is probably one of the best at actually accomplishing this!
This photo shows Manon and her daughter Megan. Manon was the International Liason at Aventura Hospital in Florida. She was assigned to Steven’s case since he was medflighted from Jamaica. Manon was able to coordinate housing for my parents and Tanya during Steven’s one-month stay down there, and she became a very close friend through her close care. She would come by Steven’s room every single day to say hello, had coffee with my Dad, and did lunch or breakfast with the three of them. She also cooked them a meal at her home that was very yummy! She is, as Tanya told me, “one in a million.” Thank you for your care, Manon!
TWELVE MORE DAYS!
The countdown is on! Only 12 more days until Steven’s surgery!
'M' IS FOR...
My phone rang last night and I was so happy to see “Steven Hill” come up on the caller ID! This was Steven’s first phone call to me, and you can almost carry on a real conversation with him now that his speech is improving. I was greeted with a very enthusiastic, “Hi!”
With Tanya’s help on speakerphone, we discussed how Halloween was approaching, and that Danny would be a monkey and Jessie would be a princess this year (no surprises there). Steven said that he was a bit sad that Lynda left, but seemed happy with the new 12-hour aide, Lisa, who had her first day yesterday. He showed me a new game that he plays with Tanya. I chose a letter (“M”) and Steven thought of a word that started with it and said it (“monkey”). I assured him that not only was his pronunciation improving, but that he also chose a great word. I noticed that Steven’s speech is markedly better. He can think of the words faster and they come out of his mouth faster too. He agreed with me that this has helped immensely with the frustration he often feels when unable to communicate his wants and needs.
We would like to formally welcome Lisa to Steven’s team. Lisa will be with Steven 12-hours on Wednesdays and Thursdays. You can see a photo of the two of them below.
Here is a photo of Danny, now 7 months, in his new monkey
PJ’s. My little monkey is now 25 pounds and literally off the
charts! These are the same PJ’s worn by cousins Addy and
Madison in a previous update. (If you're interested, they are
Carter's brand, and my Mom found them for Danny at Kohl's.)
Steven was excited when Tanya’s Dad came to visit. He seemed to show-off by becoming an “explosion of words” as Tanya described. The therapists all report that Steven is progressing wonderfully, although there are daily frustrations and reminders of how long and bumpy this road can be.
His surgery date to replace his skull flap is fast approaching. October 28th is only 3 short weeks away and Steven is surely counting the days. We are excited for this as Steven will regain some of his independence since the doctors will likely clear him to walk around the house by himself. Steven’s right arm, the one that has shown little to no movement, is also coming along and he shows trace movement in his thumb and pointer finger.
Overall, Steven remains in great spirits and continues to work so hard. Next week, Tanya’s Mom leaves after a long stay. She absolutely contributed to Steven’s progress. As a nurse, she was able to seamlessly integrate her medical knowledge, while at the same time using her mothering skills. She made Steven WORK! And he now has huge gains to show for it. Thank you so much, Lynda. You will be missed!
On Wednesday, the new aide comes. Her name is Lisa and Tanya feels she will be a great addition to Steven’s Team. Although nervous, we will all assure a smooth transition for Steven. Lisa will be with Steven 12 hours on Wednesdays and Thursdays. My Mom will cover Mondays and Tuesdays, and Tanya will work from home on Fridays. We are again so thankful to all of you who have supported Steven; because of you we are able to hire the proper care that he needs. Thank you a million times over!
In this picture you see Steven taking his first sips of wine with father-in-law, Ron. Much deserved!
And the happy couple...all smiles!
Unfortunately Steven’s surgery to reattach his skull piece has been pushed back again. The new surgery date is October 28th. We hope this date will hold and are understandably disappointed with the delay. This journey is filled with emotional highs and lows, and everyone feels the impact that news such as this brings.
Trot, trot, to Lexington
This cool Fall weather actually inspires me to lace up a pair of sneakers and hit the pavement for an energetic walk or run. I remember back in 2004, I signed Dan and me up for a 5K run that our town was sponsoring for land conservation. You can imagine his shock, as neither of us had ever run a 5K before. We didn’t even train. We just showed up (with a couple good friends) and…went for it! WOW! It was tough…but FUN! And we were so proud of our accomplishments.
There are approximately 8 weeks until Thanksgiving, which means you have 8 weeks to dust off those sneakers and let the cool air inspire you to join us for our 1st Annual ‘Strides For Stroke’ Turkey Trot. Perhaps for you that means setting a goal to actually run in it – here is your 8-week training warning! Maybe you have never run a 5K and it has always been a goal of yours, or maybe you are a seasoned veteran. Or perhaps, like me, walking the 3K is more your style.
This 1st Annual event is being billed as “No Frills, Just Fun, For Steven.” What does that mean?! Well, it means that this isn’t your average 5K… the course isn’t “certified” by professionals, and it isn’t “sanctioned” either. There won’t be a big fancy tent in my parents’ backyard and you won’t wear hi-tech timers on your sneakers. In fact, I can’t even guarantee there will be a water stop.
What I can guarantee is that you will have fun. People who value the spirit of Thanksgiving, support Steven, and want to burn a few calories before they enjoy the Turkey Day festivities will surround you. There will be coffee and smiles, and we will all celebrate autumn as we jaunt around Lexington.
There will be a 5K running loop and a 3K walking loop. Both loops will take approximately 30-40 minutes to complete. We have an 8:30 a.m. start time, which means you will be done in plenty of time to catch the Football games, get your turkey started, and go about your day with your family. Add to that a very reasonable entrance fee, and this event is a no-brainer! JOIN US!
Sign up on our EVENTS page!
Monkeys, monkeys, everywhere!
Check out these two monkeys. These are Tom Moore’s beautiful girls, Kaitlyn and Taylor, up at Newfound Lake in New Hampshire. You may remember Tom as our DJ and host at our events over the summer. Looking good girls!
"I like it!"
Thank you to everyone for your kind words regarding this new website! I hope you continue to visit and stay up-to-date with Steven’s progress and the latest Foundation happenings. When Tanya’s Mom, Lynda, showed Steven the site on Friday, he said, “I like it!” That made me cry!
Steven is continuing his slow but steady climb towards recovery. He spends his days seeing the various therapists (speech, physical and occupational) and doing brain exercises such as puzzles and workbooks. Tanya continues to work long days and has been dealing extremely well with the stress of managing her work life and family life, while coordinating Steven’s medical care.
Steven’s surgery date to have his skull piece reattached has been pushed back. It is currently scheduled for October 7th. It has proven difficult to coordinate the various doctors involved on Steven’s complicated case. It was disappointing to hear the set back, but of course, we would rather err on the safe side!
Here are a few of the latest pictures!
Steven loves doing his new puzzles!
Little monkeys! Steven’s little cousins, Addy (right) and Madison. Super cute!
Welcome to our new site!
I’m happy to see that you found your way to the Foundation’s new e-home! Thanks to all of Steven’s supporters helping me spread the word about Steven’s Story and the Steven T. Hill Stroke Foundation, we quickly outgrew the capacities of the blog. A website was much needed and I hope you find this newest growth milestone as exciting as I do!
Many thanks go to the four generous and talented individuals who donated their time and expertise to creating this great site: Lori LoTurco, Matt Dyson, Kerri Augenstein, and Luke Ehler. Lori and I grew up dancing together and have remained the best of friends. She has formally joined the Foundation’s Board as Media Director and is responsible for our relationship with Channel 5 in addition to being the mastermind behind this whole website! Matt, Kerri, and Luke all work with Lori in the South End and did not even know me or Steven prior to June. I am so deeply touched by their generosity and am forever thankful!
I invite you to “monkey around” the site and explore all the information, both old and new. Pass the address around to your friends and remember to check back here often. The “news” tab will function as the new blog, and I will continue to update it at least weekly. Thank you for your continued support and for joining us as we watch Steven continue his journey to the top of the tree!
Golf outing a success!
A few of the fabulous raffle girls at the golf outing
Here's some more of our golf supporters on the course!
And what a great picture of Lynda, Steven and Tanya!
Steven has a surgery date!
We are thrilled to announce Steven's surgery date: on September 30th Steven will have his skull flap removed from his abdomen and reattached onto his head! Tanya's Mom, Lynda, has agreed to stay an extra week in order to manage Steven's after-care.
Mid-October, Lynda will return to Ogdensburg, NY and my Mom, Marilyn, will stay with Steven Mondays and Tuesdays, and on Wednesdays and Thursdays we will find a 12-hour aid to be with him. Tanya will work from home on Fridays.
Things are falling into place and Steven is continuing to make progress in all areas of his therapies. One of his new favorite things is doing puzzles! Please take a moment to send him a card, as he loves to get mail and hasn't received much in awhile.
133 Blackstone Street
Bellingham, MA 02019
Tanya also encourages scheduled visitors on the weekends. Please email her to set something up: tanyahill1022@Gmail.com. Steven would LOVE to see some of his supporters!
The 1st Annual Golf Outing was a huge success!
Approximately 80 golfers joined us at Stow Acres yesterday for a fun day of golf, all in support of Steven. (More pictures to come shortly.) A huge thank you to everyone who came and helped make this event one to remember. About 95% of the golfers were my husband's contacts through work and I am overwhelmed with how generous they all were despite not even knowing me or Steven. Dan, you did an amazing job making this event a success! I am proud of you and feel lucky to have you as my husband.
Special thanks go to the fabulous raffle girls - I don't know what I would have done without them and they were a HUGE hit. They jumped right in stuffing welcome bags for the carts and selling raffles and contests. They now know what a mulligan is, how to drive a golf cart (sort of) and how to cut and light a cigar. Another special thank you goes to Ed LoTurco who has been tirelessly working with us since June and was by our side again yesterday. Ed hasn't missed a Foundation meeting and is always ready and willing to do whatever we need. I am forever grateful.
The Stow Acres staff was excellent, and commented on how organized and fun we were, and how we were able to add a few new twists to the average golf outing. They also loved our "uniforms"!
I truly hope more of you will join us next year. I had more fun than I anticipated and look forward to the 2nd Annual event!
As Steven says something new or reaches a new milestone, we all fill with excitement and celebrate the amazing progress he is making. However, we can't expect Steven to always have a smile on his face while working so hard day-in and day-out on climbing up his tree. There are moments of sadness, anger and frustration, and these times are so difficult that it's often easy to get stuck on them.
Steven had a rough afternoon on Saturday, and we were all in tears after hearing from Tanya what the day had been like. Steven seemed frustrated and down on himself, and was having a hard time communicating what he wanted or was feeling. Tanya was strong, and made sure Steven did not see her crying, and helped him focus on the positive by reassuring him that he is getting better! Depression goes hand-in-hand with this type of stroke, so we are trying to do anything we can to keep Steven's spirits up and stay positive!
What an amazing experience to be on WBZ 1030 AM with master of talk radio, Jordan Rich. Thank you so much to WBZ and especially to Jordan for allowing us to share Steven's Story with the WBZ listeners and help continue to educate the community about stroke. Thank you also to Dr. Matthew Tilem from Lahey's Stroke Program (which received a "Gold" achievement award from the American Stroke Association) for adding his medical expertise to the hour-long interview (you can read a stroke story and see a picture of Dr. Tilem here: http://www.lahey.org/pdf/Medical/HeartVascular/MeetingtheChallenge.pdf).
The evening began when I picked up Tom Moore, Steven's former co-worker at Wellington and longtime friend and the person responsible for coordinating the interview, from his Derry, NH home. We spent the long drive into WBZ, both nervous, discussing our interview strategies.
After surviving the scare of hundreds of bats flying out of the trees that lined the WBZ building directly above us as we walked in, Jordan quickly put us at ease with his smile, warmth and welcoming demeanor. Unexpectedly, Jordan gave us a tour of the WBZ studios. Imagine my surprise when I saw Barry Burbank, WBZ meteorologist, working inside his state-of-the-art weather center. Yes, he really has a Weather Center!
The interview began at 10:00 p.m. and Tanya called in from her home in Bellingham. Tanya did a wonderful job and told Steven's Story so poignantly. I was shocked when we went to the first commercial break to see that it was already 10:20! The time absolutely flew by.
Jordan went out of his way to continually include us all in the discussion and mention this website over and over again. I truly appreciate his dedication to spreading the word about Steven and educating the community about stroke.
He is kindly emailing me a commercial-free copy of the show, which I will promptly post here for those of you who may have missed it. To end an already fabulous evening, Jordan shared that he will personally be making a donation to the Foundation. I feel blessed to have met such a wonderful person, and to have been given this opportunity for Steven. THANK YOU, JORDAN RICH!
"Everything sale", Next saturday, 9/12 (Rain date: Sunday, 9/13)
Please mark your calendars for next Saturday, September 12th (rain date is Sunday, September 13th)! From 9-1 there will be a HUGE multi-family yard sale in my Mom's neighborhood! Head over to Sherman Street in Lexington for some great deals. Lots of kid stuff, housewares and clothing!
Jessie (shown above) will be holding a bake sale also. Inspired by another Amesbury 4-year-old, Riley (you may remember me posting about her generosity earlier in the summer), Jessie is excited to make signs and spend all day Friday baking yummy things "to help Uncle Steven." Jessie fully understands that all funds raised will be given to The Steven T. Hill Stroke Foundation, and is proud to be helping her Uncle.
Also being sold: monkey tees and hats! And new to our collection: items for Fall, including long-sleeve tees!
Wanted: Speech therapist
Hello Steven Supporters!
Steven visits the surgeon at BWH tomorrow and hopefully gets a date for the reattachment of his skull piece! We are all eagerly anticipating the news!
Soon after the surgery, Steven's insurance will no longer cover home care therapies. Steven will do a long commute to and from Spaulding-Framingham for his physical, occupational and speech therapies. These sessions are approximately one-hour each, and due to the distance of Framingham from Bellingham, all three therapies would be scheduled back-to-back.
HOWEVER, this is simply too much for Steven at this point. Each therapy requires physical strength and/or mental concentration, and 3+ hours in a row is too exhausting to be beneficial for him.
We are in the process of archiving older posts and bringing over much of the content from the earliest days of Steven's stroke, where I posted on a Blog site. In the meantime, you can visit the Blog site, and read the earlier posts: www.STHStrokeFoundation.blogspot.com.