March 20: I would like to just give a quick update. Kevin has had a few tough weeks with shoulder pain so he
has been taking medication to try and subside the pain which has been causing him to be very tired. The pain
was so bad that he couldn’t even make it to Project Walk last week. Knowing Kevin and the high tolerance he
has for pain then I knew he really must be hurting.
Kevin has had a very busy week. Monday he had to have an ingrown toe nail taken care of which is very
common for people who can’t put weight on their feet. Tuesday he had to have a procedure redone that
previously had been done incorrectly
Yesterday he went for a checkup at Spaulding which hopefully explained the pain he has been in. According to
the doctor when Kevin was injured some of the nerves died in his shoulder. Over time these nerves regenerate
and in that process they are very sensitive. The doctor did say that this pain in time will subside but
unfortunately he was unable to give any time table because no two patients are alike when it comes to Spinal
Cord injuries.
Other than a number of equipment issues , still waiting for his electric chair to be delivered which supposedly will
be coming on Monday but who knows, everything going along smoothly. I guess that will do it for now I will
update hopefully more regularly to keep you all informed.
Thanks
Tara
March 1: Sorry about the delay in posting I know it has been a month however things are going along slowly.
Kevin started with massage 2 days a week, cranial sacral therapy which brings the central nervous system into
harmony by working with the Cerebrospinal fluid and trigger point massage because this neck and shoulder
area are still way out of whack and nobody can really tell us why, I am beginning to think it is the stupid
wheelchair he has it does not fit him properly something I had mentioned right along to everyone and there is
still no word on his chairs coming. He continues with Project Walk two days a week and has begun to get severe
nerve pain again this time all over his body (not sure if we are overstimulating his nervous system) so hopefully
this is the nerves trying to figure out what is going on - they are confused. I hate to see him in so much pain
however if it translates to feeling it will be a good thing!
Not sure if you all are aware after having his van for only two weeks it was hit thank goodness no one was in it
so no one got hurt so we had to get a rental - no word on his. Just another thing to deal with that will make us
stronger!!!!!!
February 8: Kevin just finished 3 weeks at PW. He is able to feel, more then 50% of the time, touching on his
left foot. His shoulder pain has gotten considerably better, it still is sore but no meds are needed. Check out
some of the pictures. He may even be on their website for Boston clients near the end of the month.
January 28: On Friday Kevin called me into his room to show me that he was able to lift his right arm with
control something he has not been able to do at all. He loses it after doing so many times but later it does come
back. He was so excited to show everyone. Funny thing is he doesn't remember that is how the left started he
couldn't move that at all either and this am he discovered he could move that in a different way then he could
before. He has much more severe nerve pain (which translates to burning) in both his legs and I myself think this
is all due to PW! I say this because he does not have those feelings in his arms and I cant explain that. They are
so aggressive with what they have him doing it is unbelievable to watch and compare to the last 4 months. I
posted some pictures of him there. I am sure I will have many more.
January 23: Kevin has been home for one week. Of course it has not gone smoothly at all. Equipment is not
correct and medications took a week to straighten out and I have found out through a process of phone calls
that there is no record of wheelchairs being ordered. I am still working on this to find out what happened, have
not heard from anyone yet. Kevin started Project Walk yesterday afternoon. I think it is going to be great for him.
He already in two hours did more than ever at Spaulding. I realize it is probably like comparing apples and
oranges in regards to restrictions the hospital has to follow and the fact they have so many patients they surely
could not do as much work with one person because Project Walk is one on one therapy, but the fact that
yesterday Kevin was put in the standing frame for the first time since his injury, something that had not
happened in the last four months for whatever reason and he was in it for 5-6 mins and was fine. They also had
him sitting alone trying to balance, not for long but it is a start. They put him on a Total Gym machine for weight
bearing exercises and had him lying on his stomach holding himself up with his elbows. It was extremely hard
work for Kevin but he needs to strengthen his shoulders more so they will be able to work below that level. We
both liked it very much and I hope it is just the beginning for great improvements for Kevin. They allowed me to
take pictures I hope to have a few up for all to see.
January 15: All went pretty smooth. Of course they were on time who would have thought that, not one person I
saw left when they said they were suppose to leave, so we were not there on time, we were waiting for the
equipment to arrive and they were all waiting for us. So leaving was kind of hectic which I think was a good thing
not time for too much crying. Kevin said his goodbyes and told them all he would be back to visit. Some that we
knew we would not see again was hard and we couldn't find Charlotte anywhere to say goodbye but we will stay
in touch with her. Kevin is happy to be home. Thanks again to everyone of you who helped make this much
easier for us by working on the house, bringing us the wonderful meals, it did feel good to sit down at the kitchen
table and eat like human beings not running down to the cafeteria or for some of us the North End and being
their for all the events that have taken place for Kevin. I cant say it enough but your support has meant more to
me than I can put into words. THANKS TARA
January 14: Well at this time tomorrow Kevin should be home in HIS bed after a very long 5 months! The house
is ready and so are we. I will hopefully be turning this update thing over to him in the near future. Will keep you
all posted as to how we made out on saying goodbye I am sure it will be difficult.
January 5: Well I know that is has been awhile but same old thing going on at Spaulding. We were told that
Kevin has until Jan 15th and I know for sure he will be home then. The house is coming together! Without the
help of all the friends, Brian Main and Steve Gervais for the planning and to all of you who showed up to do
whatever was needed, definitely too numerous to mention but you all know who you are and even the people we
have just met, namely Richie this would not have been possible this quick and Kevin would be coming home to a
disaster! WE CANT THANK ALL OF YOU ENOUGH!!!!! I know Kevin is getting anxious with the date changing all
the time and him wondering how it is all going to work once he gets home but because of all of you his transition
home will be much easier.
Also wanted to tell you all that I have signed Kevin up for a program called Project Walk. Projectwalk.org. It is a
recovery based rehab approach (non-traditional). We are going into this with an open mind, we are not
expecting him to walk out of there we are just hoping for him to get stronger and get more function back than
thought possible. I plan on keeping you all updated on his progress through this program but wanted to let you
know what is next on his long journey to recovery.
So with outpatient therapy, Project Walk and Acupuncture Kevin will be very busy but I am sure he will be happy
to have all this going on.
December 21: Well Kevin will be spending Christmas at Spaulding, he received another extension. Don't have
a date but hopefully I will be giving them one this time, when the house and ramp are ready and it will be a safe
environment for him to come home to. There was also some issues with equipment not being ordered for him so
we are working on that also.
December 12:Well some good news, Kevin got a final extension for Dec 23 that is all I can get. Hopefully they
utilize the last 10 days to the max. Although with this new breakfast club he is soooo tired getting up at 530 and
working to his exhaustion is killing him, it is like when he first got there. I thought we were past that!
When Kevin first got there he was so sick and in pain that a lot went on without him but now that he is more like
himself he has gotten to know some people.
As of now there are two other young people with him, Morgan and Charlotte. Charlotte just got there two weeks
ago but Kevin and Morgan get along great and have become friends, and I think it is so nice for them to have
each other. Morgan will be going home the day before Kev, I think that will be hard on him along with leaving the
security of the people who have been taken care of him for the last almost 4 months.
December 10: Well Kevin will be mad when I tell all of you this but when I left tonight I noticed his nurses call
light, which is a sandwich board type of equipment that is normally clipped to his pillow so he can turn his head
and call the nurse) was on his lap. He will be mad not that I told you but he wont think it is a big deal but I do!
And today they started a breakfast group for additional therapy which meant he had to start to get ready at 530
in the morning which none of the participants were too happy about but at the end of it I put an empty apple
juice container in his left hand and he was able to hold on to it for a few seconds, his reaction was "woo hoo" not
sure if he was being sarcastic but if I cant find some more adaptive equipment to help hold his fingers together
he may be able to hold stuff soon.
December 9: It has been awhile but everything is going along pretty much the same. Kevin's pain seems to be
decreasing in his shoulder area. The acupuncturist has been there 3 times and she has showed me how to
massage different areas that control the neck muscles to relax and reduce pain (and it does work) and also how
to control the spasms when they happen. Kevin is also drinking an herbal tea which is suppose to help
circulation. (Tastes and smells really really bad).
Friday night, last minutes a friend, Eddie Murphy, (no not THE Eddie Murphy) asked Kevin if he wanted to go to
the Celtics, the Dr gave Kevin permission and he went. He had floor seats but when they got there they wouldn't
let the wheelchair on the floor so they had to move but Eddies girlfriend is one of the dancers and she brought
some of the girls up to meet Kev and take pictures with them. He again enjoyed being out for the night. Then
yesterday Erin, Kevin and myself walked to the Galleria Mall sidewalks, drivers and shoppers really not
wheelchair friendly but we made it without too many confrontations. (Those of you who have been out in public
with Erin and myself will realize what I mean when I say "without too many confrontations")!!! I bet you all don't
realize how many lazy people take the elevator in the mall.
Forgot to mention how much work has been done on the house. Again I am overwhelmed, I just don't know what
to say about all of you who have been there to help. It is moving along much quicker than I ever thought it would
THANKS TO ALL OF YOU!!!!!!!!! I cant even describe the feelings I have, I am so happy seeing everyone then I
just think of why it is being done and it makes me sad. Then I think that maybe we are helping some of you
because you may be learning things you might not have known how to do and some of you get to use your tool-
belts! (Just kidding).
Just wanted everyone to know how much is getting accomplished and hopefully there will be pictures to check
out.
THANKS Tara
December 2: Just to let everyone know Kevin was granted a two week extension although I still don't have a
release date I am hoping for a little longer than two weeks but I wont get my hopes up.
November 24: Last night was just unreal!!!! I just don't know what else to say! Kevin made it back however he
was in a lot of pain and I am sure he will pay for it over the next couple of days. He just didn't want to put the
collar on. His nurse Edward even waited for him an hour after his shift ended so he could get him back into bed,
because the third shift normally has not much to do the aide really didn't even know how the lift operated I had
to show her. Sue had given me some trays of goodies so I had given the driver some (who waited in the parking
lot) I didn't know he was out there, and gave Edward a tray and left the rest for the shift. When I talk to Kev I will
let you all know how he is feeling after his first big night out.
Well just got back from Boston and Kevin was just wonderful. He told me that he had a great time and wanted to
stay longer last night however he was extremely tired this morning, Erin went in early and he stayed in bed for
most of the morning and he sent her to the North End for his lunch and a snack for me. His shoulder hurt but it
was more manageable than last night. When I got there he was laughing with Erin, Jeff and Kandra and talking
about last night and saying how it was great to see this one and that one. Then when Greg got there he was just
finishing therapy which consisted of basically a massage to work out the knot and he did the same with him then
he decided he wanted something else good to eat so Kevin, Greg, Donny and myself went walking the neighbor
to find something open and we ended up at Burger King (not by choice unless something is going on at the
Garden nothing is open and Donny had his standard winter wear shorts on so we couldn't go to far)and we were
laughing and talking again about last night and I will tell you that I think the night helped him more than anyone
of us will know, it seemed as if he was at ease with the fact that he saw everyone and nothing changed. I know it
was emotional for him but I think it was better all at once than a hundred first time "how are yous".
When we got back we were sitting in the solarium with Morgan (another patient) and her family and Morgan and
Kevin were laughing and talking about how their shoes will never wear out because they wont be getting dirty or
touching the floor. Then it came 8 pm and they were not ready for us to leave he was wide awake and ready to
go.
So thanks again to everyone for a extremely successful night in more ways than you can imagine!!!!!!!!!!
Tara
November 19: OK some good news Kevin got the OK from the Doc today that he can be without his collar, he
was told to start slow 15 mins - 1hr a day or three 15 min times during the day. We found out he could have
been doing this since Thurs but someone didn't know how to use email too well. But he is happy about that. The
acupuncturist came this AM and it was amazing how she could make the pain come and go with the placement of
the needles when she left he was still is a lot of pain however around 3 he was able to get up in his wheelchair,
something he had not been able to do the last three days. It may have helped that they did change the
wheelchair but we may never know why so long as he has a lot less pain.
November 18th: Well not much happening. Kevin was pretty miserable Friday and Sat and even today with
shoulder pain. It was so bad yest he went back to bed for 45 mins and then got up and had to go right back.
Today he got up early in day they had therapies today since there wont be anything on Thurs this week, but
then was back in bed with ice and heat trying to help. His spirits were excellent today even with the pain he was
tyring to hit Brian in the head, cant remember for what I tried to get a picture of him doing this not sure how it
came out. I have the acupuncturist finally coming in the am hopefully that will help with the pain.
November 12:Well Kevin had a pretty good weekend. When we got there on Friday he said that he would like
to go to the Celtics that night. We asked the dr and he checked him out and said he could go so Dave went over
to get tickets, well disappointing we could only get 2 the rest were sold out and then we found out the price and I
really wasn't sure if he could take it that long so we decided to wait. Then on sat he stayed up and awake until
we were leaving after 8 and last night he was up and awake until after 7. He still has pain in his shoulders and
he had numerous spasms not sure why all of a sudden but for the most part he was comfortable
November 8: Just added a picture of Kevin on the tilt table I talked about previously. The aim is to get him
standing upright to be weight bearing and circulation will improve. This is at about 40% give or take.
November 6: Well 9 weeks into this and there really hasn't been much different going on so not much to report.
Kevin has tried a few new things in the last couple of days. First he had an x-ray of his neck and according to
the doc here everything looks good, fusing seems to be healing well, he shipped a copy to Worcester for the
surgeon to give the OK hopefully the x-ray will be the only thing needed not an MRI or CT Scan then the collar
could come off and he could start to work on the muscles in his neck that he hasn't been using for 3 months. He
also has been trying this Mobile Arm Support to help with daily activities and also can be used with exercises
without someone holding his arm. There is a picture in the photo gallery of him using it to exercise and write for
the first time, and also flip pages of a magazine. The writing is hard because not only is his hand at an odd
position he is a righty and his left arm right now is stronger so he has to learn to write left handed (this would be
like any of us becoming lefty). Monday when I got there he told me that he ate lunch with very minimal help using
this arm support and that he ate everything they brought for him even the ice cream and pudding which he
really doesn't like. I think he was happy he did it without someone helping him with the whole lunch. They
removed the taping they had done last week to let his skin breathe and he could notice a difference in the pain
levels so they are re-taping tomorrow. He can tell how much the tape pulls his shoulders back and that helps.
They are also going to try and lie him on his stomach tomorrow and start to move some back muscles, he is
really looking forward to this, he sleeps on his stomach and it is another position for him to be in if he can
tolerate it with his neck being weak.
There was a bunch of people up last night and we were talking about the Trivia Night Erin is trying to plan and
Kevin was excited about this and said that he wants to go to this and they were arguing whose team they wanted
to be on. I was happy he was looking forward to something like this.
November 1: Today Kevin and Donny went to the aquarium with the therapist for 4 hours. They had Kevin in
an electric wheelchair and he is suppose to drive himself. Donny said he did pretty good but, he also said he
was amazed at the rude, ignorant people that would walk right in front of Kevin or even move to stand in his way
to look at something. He got tired so they took over but he did it again on the way back. They tried a different
technique of taping yesterday and it also seems to work on the pain in the shoulders. I am trying to get an
acupuncturist in there to treat him as well for both shoulder and nerve pain.
October 28th: Kevin has been at Spaulding for seven weeks. Thankfully after numerous tries they have finally
found a way to tape his shoulders to reduce his pain somewhat. They did take an xray of his left shoulder Sat,
however we do not know the results as of today. We went for a walk around Causeway St, kind of windy today
but the sun was warm and he said it felt good. When we left he was wide awake waiting for the Red Sox game to
start.
October 25th: Today was a great day in my eyes and Kevin felt good! Not a lot of different things this week,
Kevin went to the Cambridge Side Galleria for this weeks outing to buy Halloween treats when they bring the
pedi kids to trick or treat. His shoulders are still bad but his left one has a knot in it that is so hard and large it
feels like a bone (It is not). A few of them say that they have never quite seen anything like it before (leave it to
Kevin). On this note I will mention that when they were trying to get the trach out and looking at his throat they
mentioned something to me about when he had his tonsils out, I told them he never had his tonsils out, in fact, I
can only remember a handful of either sore throats or ear infections in his whole life. Well you guessed it Kevin
doesn't have tonsils but we never knew this. Like I said leave it to Kevin always something different.
October 19th: Kevin reached one of his little victories today, they have this thing called a tilt table and he gets
strapped on to it and it goes up slowly to a standing position, however they have to do it in small increments
because of blood pressure issues. Last time he was on it he told them he wanted to get to 50% incline well he
did get there today but he wasnt there long when his blood pressure kind of got low so they lowered him and
waited and tried again and he did it again and he looked at me and said well I got there. He was happy now he
can try for more, the purpose is to get standing upright for weight bearing, circulation and just to get out of the
chair!
Forgot to mention yesterday he was fitted for his wheelchairs, yes plural he needs two of them. He got to pick a
few things out like the kind of drive system it will have, front wheel, rear wheel or midwheel, hopefully the way he
will drive it and most importantly the seat and the color. You should see the colors they come in.
October 18, 2007: Kevin finally got the haircut he so desperately needed and wanted, he looks pretty good,
have no idea how she did it but it worked out. Tomorrows outing had to be cancelled due to van issues but they
are rescheduling for next week. Shoulder pain is at a 4-5 on a scale of 1-10 but seems to be handling it with a
minimum of medication.
He is now in another new room. Don't know why they move around so much but right now he does not have a
roommate and he has a different view he looks out at the Zakim Bridge so he can watch the traffic not move!
October 14, 2007: Kevin has had a few good days. His shoulder still hurts just not as much. Today he met
Dane Cook, photo in gallery.
October 9, 2007: Just wanted to let everyone know Kevin and a good day today, his fever was gone and the
shoulder pain has subsided quite a bit. Went outside for respiratory therapy for about an hour along the shores
of the Charles, kind of windy and cool but he didn't seem to mind. Like I said before so many ups and downs, it
is crazy. He also ate pretty good at supper even had chocolate cream pie for dessert. Hopes to get a hair cut
tomorrow. We will see how this turns out I am expecting him not to be too happy with the results hope I am
wrong or I will pay for it!
October 8, 2007: After having what I would call a good weekend, except for tremendous shoulder pain.
Because Kevin's shoulders are the strongest muscle he has right now they tend to get overused, just holding up
his head (while he is in bed he does not have to wear the cervical collar which gives him some relief from that
but causes other issues) causes pain in his shoulders, and pull the muscles down which creates a lot of pain for
him and of course they are the ones he can feel.
Kevin was not real good at all today. The pain in the shoulders did subside however he ended up having a fever
all day as high as 102.3 and was miserable from that.
He just cant seem to catch a break if it is not one thing it is another for him. Hopefully tomorrow will be a much
better day.
October 5, 2007: Kevin had his feeding tube removed today. Although he has been eating real food for a
couple of weeks they kept it in to take meds and water just in case but he is doing OK with that. He also had his
room moved, I understand they are getting a few new patients in the next couple of days and his room was right
by the nurses station so I guess the new people will need to be close by like he did at the beginning.
October 4, 2007: Kevin has been at Spaulding for one month. Seems like the accident just happened yet it also
seems so much time has passed. This week has been kind of uneventful which is a good thing. Today he went
on another outing this time to lunch I got to go with them I asked if he thought he would do it again on the
weekends and he seemed OK with it.
September 28, 2007: Well week number three. This week was a good one, no fevers to speak of, he is off all
monitoring systems, tolerating swallowing most of the pills so hopefully the feeding tube will be removed. Starting
to eat better but most of you know that for Kevin that doesn't say much, not really what you would call an eater
so we are having a hard time trying to find something he will eat! Today he went on his first outing - he went to
the movie theatre to see Kingdom. He was able to stay awake for most of it and other than being cold he said
he enjoyed being out.
I want you all to know that I am reading these postings to him and he appreciates everyone's love and support. I
keep saying it but he is overwhelmed by the caring of everyone. The only problem is that because of the
medications he is taking he keeps falling asleep so it is hard to respond but hopefully that too will change and
he will be able to write to each and everyone of you.
Thanks again for EVERYTHING.
September 25th: Yesterday afternoon they removed Kevin's trach tube and they told him that the hole should
be healed over by Thursday. His diaphragm appears to be working which was in question at UMASS, however
since he is not doing much exercise he has to do breathing exercises to keep his lungs healthy. They came in
today and told him they could not stop tube feeding him however until he can take meds orally the feeding tube
has to stay but hopefully that will be gone soon also.
A typical day for Kevin is Physical Therapy and Occupational Therapy from 8:00 am until 3:00 pm. He is
learning to use voice activated computer software and learning to eat with adaptive tools.
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