WELCOME TO JUST4JEFF.INFO!

Presented in Jeff’s favorite colors – navy and baby blues.

Last modified September 6, 2009 10:30 AM

Please email problems with or suggestions for this site to mikea57@roadrunner.com.

On the evening of Saturday, June 11, 2005, Jeff collapsed in the basement of his parent’s home, becoming the victim of a congenital heart condition known as Wolff-Parkinson-White Syndrome.

Although emergency responders were able to revive him, Jeff has a long and unmapped road ahead of him. This site is dedicated to raising funds to help him and his family get through this nightmare.

If there is one word to describe you,

Strong is what comes to mind.

From your first fall as a kid ‘til now.

You are truly one of a kind.

You live the crazy life,

From morning until night.

Whether it’s work, the car, a girl,

Or out riding your bike.

Your sense of adventure is thrilling,

Your sense of humor is infectious.

You’ve always been so wild and crazy and,

Your girlfriend count is endless.

You have so many friends,

Who care about you so much.

And a family who has been by your side,

No matter what.

You’re a terrific person, yet so much more,

An uncle, a cousin, a friend, and a brother,

A nephew, a grandson, and even still,

A son to two people who will love you forever.

You’re strong and brave and courageous,

This too you will rise above.

Remember all those who have been by your side,

They care about you deeply and we all give you our love.

__________

Written by Jeff’s cousin Lisa Burt, a few days after his collapse.

FUNDRAISERS

Silicone Bracelets – The cost is $3 and all the money benefits Jeff's rehabilitation. To find out how to get bracelets, click here.

T-Shirts – With “Just For Jeff” silk-screened on the front and back. Shirts are available in Small, Medium, Large, X‑Large and XX‑Large sizes. The cost is $10 per shirt and all proceeds benefit Jeff's rehabilitation. To find out how to get T‑shirts, click here.

Evan Dawson, news reporter from 13WHAM News in Rochester NY, interviewed Roxann and Jeff on Wednesday, March 29, 2006.

Evan was also born with WPW but fortunately was diagnosed and had it corrected before he suffered a devastating attack.  WPW is not as rare as it is undiagnosed, simply because people aren’t tested for it.  Evan hopes to make the public aware of this heart condition so that in the future, children and teenagers may be tested.

Play interview with Windows Media Player™ (recommended)

Play interview with RealPlayer™

UPDATES
Provided by Jeff’s mom, Roxann.

September 5, 2009 – It has been a very long time since I updated the site. You would think I would keep on top of this, but for some reason, I just put this on the back burner and then I forget. I really don’t mean to, but it happens.

Jeff’s road to recovery is still on the upswing, but as in the past the progress is slow. This is not unusual for this type of brain injury. The important factor is that he is still progressing.

Last Saturday, while standing in the Easy Stander, he started to move his right forearm. At first I thought I was seeing things, but as it happened I talked with him about it and he got such a proud look on his face. He slowly moved it slightly up and down and then he turned his wrist to the right and then to the left. I asked him if he could move his left arm. He laid his right arm on the stander tray and very slowly lifted his left arm up and down. He did not turn the wrist, but that will come. Jeff’s movements are extremely slow and require a great deal of concentration. Throughout the week he has continued to move his arms. The staff is amazed at the movement. Why now, after four years? From what I understand, the medical field really doesn’t know why it takes so long for the brain to heal. The brain apparently needs to rewire itself and with constant work and time, it can do so. We have wonderful staff caring for Jeff. They all work very hard for a mutual goal: Jeff’s recovery. Many of them did not know Jeff before, but almost all of them knew someone who knew Jeff. It is a small world.

For the past few weeks, Jeff’s physical therapists at Happiness House have been trying something new with him. Unfortunately I am not able to attend these sessions, but my informant – my sister – gives me explicit details about what they are doing and how he reacts. They have been laying him on his stomach and working his back so his spine does not curve more than it is from lying in bed so much. I truly believe that there have been many changes since they have been doing this. He sits straighter in his shower chair, he stands straighter in his Easy Stand, and best of all, he seems to have more movement. He is more alert, and he even smiles more.

We have had many staff changes during the past few weeks, and Jeff has adapted to this very well. It is amazing how he takes to some people very quickly and others it takes awhile. About two years ago, if we had a staff change, it affected him for weeks, now it doesn’t really seem to bother him. On the other hand, don’t try to change procedures as he will let you know. This week, staff who normally does not give him a shower picked up a shift and gave him a shower. As we were bathing him, she changed things up a bit; Jeff did not go along with it. He glared at her, then she did it again and he was really upset. He is so very funny; what a wonderful personality he has, even after all he has been through.

Jeff is following commands more and more. When we sit him up in bed, he will usually hang his head. He looks so much like my father when he does this. I will tell him to raise his head and continue to tip it backwards. He will do this, but will stop after a very short head lift, so I have to continue to say further. He will then go a bit further and stop until I repeat further. This continues until he raises his head to a certain level, then we will lay him down in bed.

We have been able to get Speech Therapy reinstated at Happiness House. We are trying to obtain a device that will allow Jeff to communicate better with us. All he has to do is focus on a computer screen and he will be able to spell out words. However, he needs to work with the therapist first. He is doing well with her; she is working on his swallowing techniques with the hope that he will soon be able to eat in addition to the tube feed. He does get treats now and then. Of course he likes sips of alcohol – wine, Smirnoff, beer – and soda, prune juice, and coffee. He also likes sherbet, gravy, steak juice, but not mashed potatoes. He demands to have flavored chap stick on his lips in the evening, and will not settle down for the night until this is done. Many times, he will not settle down until I treat his lips to chocolate chap stick. I think that it is the taste and smell that he likes. He will lick his lips, then he needs more.

He continues to talk, but now he is talking with the staff. Some of the staff he actually raises his voice to … one in particular. His phrases include “I’m done”, “No I’m not” (when you tell him he is okay), and “I don’t know”. He also says “yes”, “no”, “aah” (when you want him to open his mouth, but sometimes he says it and doesn’t open his mouth), “mom”, and he calls several staff by name. It is believed that one day he called the dog by name. We have two Dalmatians and he actually said the right name.

Jeff has come so far and we know there is more to come. Some day, he will be able to walk, maybe not run, but he will be able to walk. And someday I am sure he will once again ride a motorcycle. But it will only be a small one if I have anything to say about it.

His service coordinator tells me some day Jeff will have his own apartment. I am not sure I will be ready for this, but I will have to adjust. That day will be here sooner than we think.

Jeff needs interaction with his friends and family, so if you are in the area, please stop in to visit with him. We try to take him to family functions if the weather permits. We actually took him to his Great Aunt’s birthday party in Wellsville. He did very well, but it really messed up our schedule. Everyone was so very excited to see him.

Thank you so much for your continued support. Without your prayers, Jeff would not be where he is today in his recovery. Thank God we didn’t listen to the hospital staff when they told us he wasn’t going to make it. Even now the doctors say he will most likely not continue to improve, it has been too long. Just look at him now, and wait to see what is to come. Please continue to pray and support Jeff, and on behalf of the staff, I guarantee we will continue to work hard to better Jeff’s life.

FAITH – HOPE – LOVE . . . . . . . . . . BLESS YOU ALL

February 14, 2009 – Again I apologize for being negligent in updating the web site. A lot has been going on with Jeff and our household. As I explained before, we were trying to get in-home care approved for my trip to Boston for surgery. Approval came from the county and then the task of interviewing and hiring staff for 24/7 care. I am very fussy when it comes to caring for Jeff and my standards are high, so it is sometimes difficult to find staff. After three weeks of phone calls, interviews, and training, the staff was in place two weeks before I needed to leave for Boston.

My trip to Massachusetts General Hospital (MGH) in Boston did not go as expected. I was scheduled to have a tracheal reconstruct completed on February 11; however, the placement of the damage to my trachea changed the statistics from the surgery being 90% successful to 50%, and therefore the tracheal reconstruct was not done. The surgery was replaced with a tracheal dilation, which has made my breathing much easier. MGH is extremely thorough with their pre-op testing and it was discovered that my ANA was positive and my ANCA was negative, which is not a great combination for this type of surgery. The Thoracic surgeon has been conferring with a ENT (Ear, Nose & Throat) surgeon and a Rheumatologist. The Thoracic surgeon is leaning towards Sjogren’s Syndrome and the Rheumatologist is leaning towards Wegener’s Disease. (I have tested negative for the Wegener’s for eight years.) The symptoms of both diseases are very similar; there is no cure, but there is treatment. I have been placed on drug therapy and need to return to MGH in Boston every 60 days for doctor’s visits and reviews. If the drug treatment is successful, I will not need to have the trachea reconstruct, and may possibly only need the tracheal dilation now and then to make breathing easier. None-the-less, I am home for now and breathing comfortably, and hoping that I do not suffer the severe side effects of the five new medications they have placed me on.

Now, let’s talk about Jeff. Jeff is doing very well considering that we hired three new staff members. As usual the young blondes are his favorite and he loves to stare at them. Jeff’s sister Brenda has been working with him the past few months, and all is going well with them. At first he gave her a hard time – some things never change – but she won in the end. It took him a while to get used to someone being in his room 24/7 but we all know that Jeff loves attention so he adapted very well.

In January, Jeff visited Dr. Dombovy at Unity Health and she changed his medication: she placed him on brain stimulants, and the results have been wonderful. The medication has been increased once with more increases to come, but I did not want to make any medication changes while I was out of town. A call to Dr. Dombovy will take place this next week to get back on schedule. When Jeff takes the stimulant, he is much more alert, looking around his room as if to say, “who decorated my room like this?” There are a lot of family pictures, Sun, Moon, and Stars theme, but no nasty posters, if you know what I mean. He becomes extremely verbal; even though we are not able to understand every word or sentence, he is still vocalizing. He continues to remain healthy, thank God, and he continues to go to Happiness House in Canandaigua for therapy; however he now goes on Monday and Friday.

At times, he enjoys his showers more than others, but different staff have different techniques and I am not sure if that is a concern of his or not. I am sure he will soon let us know. Even though we try to keep procedures the same, there is no way we will all identically duplicate a procedure. Jeff continues to use the urinal, working better with some staff than others, but that is probably Jeff just being Jeff. We have not seen any signs of kidney stones since last August, so hopefully we are on the right track there.

The staff continues aggressive range of motion with Jeff. His day starts at 6:30 AM with his first set of ROM and ends at 7:00 PM with his final set. By the end of the day, both the staff and Jeff are exhausted. When we first brought Jeff home, we told him our goal was for him to sit on the edge of his bed, stand with assistance, and pivot to sit into his wheelchair. The goal was to be accomplished by Christmas; however, we forgot to say which Christmas. Let’s hope and pray that this will take place by Christmas 2009. He seems to be gaining more control, little by little. The steps are slow but they are noticeable, which is all that matters. Today is the first day of the rest of our lives and we are going to meet our goal. Time does not matter, only progress.

March 5^th will be a very important day for us. If all goes well, we will be awarded Guardianship of Jeffrey. This has been a very long process, but we can finally see the light at the end of the tunnel.

I know that many of you have been praying for us and we thank you very much for that. Please continue to pray, as we continue down the long winding road to recovery. Without those prayers, we could not make it through these trials and tribulations that we have been chosen to deal with. Thank you for your cards, your calls, your thoughts, and the continuous offers to help and the love. There is absolutely no way that we could ever repay you for the acts of kindness or even thank you enough.

FAITH ***** HOPE ***** LOVE

BLESS YOU ALL

October 25, 2008 – Well, It has been a long time, and I know that I wrote before that I would let you know as soon as the bathroom was done, but I didn't.  The first shower was on September 17, 2008.  It went alright, but the more recent showers have gone much better.  All the evening shift staff have been trained on the showers and I am not sure who enjoys them more – Jeff or the staff.  Jeff has been making great progress, still slowly, but progressive.  He is speaking more, even repeating a sentence once in a while.  One staff member was taking him for a walk, and our neighbor joined them.  The attendant realized that she had not secured Jeff in the wheelchair with the lap belt, so she parked the wheelchair, and said to Jeff, "I'm so sorry Jeff".  The neighbor said, "I won't tell", and Jeff said, "I won't tell". 

Jeff also visited the Emergency Department at Geneva General Hospital on September 11th.  He seemed to be having abdominal pain and was very sensitive to the touch in certain areas.  The nurse that attended to him was a school classmate.  Jeff was asked questions and often responded with a yes or no.  That was wonderful, both for us and the staff at GGH ED.  They always take such good care of us when we come in.  We hadn't visited them in 11 months and they were amazed at his progress.  However, the outcome of the visit was Jeff was very healthy and needed to be placed on a diet.  I never thought skinny Jeff would need to go on a diet.  So on a diet he is and so far he has only lost 4 pounds.  He needs to drop about 15 to 20. 

Jeff had been passing kidney stones, not uncommon for males in his condition, but just a few teaspoons of lemon juice in his water daily, seems to have taken care of that.  We are now working with a neurologist in Rochester to reduce his tone in his arms and legs so that he can get more mobility of his limbs.  As stated above, his progress is moving much more quickly since the showers.  He even spoke to the neurologist.  All the answers were no, but they were responses.  It is amazing how the doctors look at the future differently one he responds to them.

His last visit to his primary care physician was also very positive.  The doctor was completing Medicare forms and stated that he is no longer considering Jeff to be in a persistent vegetative state because his is using a urinal and speaking productively.  He didn't say what condition he was in, and I was too excited to even think to ask.  FINALLY, people are seeing that Jeff is there, he just hasn't figured how to express himself.

Jeff hasn't been himself this past week, but on Monday he received his flu shot and a pneumonia shot, so it is very likely that they have affected him.  He also has a touch of pink eye again, the third time in just a few months. 

We have had trouble with the lift on the van, but a very wonderful person has been helping us with that.  We are so lucky to have such wonderful friends, family, and neighbors. 

Now for some bad news, but not about Jeff.  Many of you may know that I have had some problems with my breathing in the past.  My last surgery was in the fall of 2002, and things were going great until early September.  I just had to make a trip to Boston to discuss my options with two surgeons; the outcome is a bit frightening.  I need to have my trachea rebuilt.  I have a rare condition called Idiopathic Subglottic Stenosis.  I will be in the Massachusetts General Hospital for 7 - 8 days and then must remain in the area for at least two days.  I will be unable to do anything for at least six weeks.  My chin will be stitched to my chest.  If I don't have this surgery, I will need to have a tracheotomy for the rest of my life.  I have had two before and I really don't want that unless that is the last option.  I am frightened and very concerned on the care of Jeff.  I will not be able to be left alone with him and the county will not increase the hours that we are given for his care.  I care for him 74 hours a week.  The only recommendation that we are getting is to put him back in the Nursing Home during this period, and I will not do that.  I promised him he would never have to go back to the Nursing Home so that is not an option.  If anyone has any suggestions, please give me a call or email me.  I need to schedule the surgery soon; I only have 40% breathing capacity at this time. 

As in the past, we ask for your prayers for Jeff's continued recovery, and we thank you for your thoughts and prayer in the past.  Jeff would not be where he is today, if it weren't for you.  FAITH, HOPE, AND LOVE !!!   Bless you all.

August 12, 2008 – Jeff is doing great.  He is taking medication right now for ear infections, but other than that he is fine.  He is still passing kidney stones (gravel, as the doctors refer to it). They have completed a number of tests and cannot figure out what it causing the problem.  Jeff is a real trooper about it.  He never complained about his ears, but when we saw blood, we knew something was wrong. 

Jeff's bathroom is under way.  We have a floor, painted walls, textured ceiling, and a shower with no running water and a hole in the center that gives you a wonderful view of the basement.  Hopefully more progress will take place this week, then the custom counter/sink will be designed and made and soon we will be done.  I will certainly share with you our experience of giving Jeff his first shower in over two years.  We are also hope to begin training on the commode, but I think we will wait until it is hooked up. I am not sure how Jeff feels about all this, but we will find out.

Jeff went on a date on Saturday with two beautiful, young ladies.  He went to Yard Fest at his friend’s house.  He went last year and seemed a bit nervous.  Of course, I was there just to make sure he was okay.  This year I broke the ties (actually I wasn't invited to tag along) and he went with the young ladies alone.  But his sister was there to keep an eye on things.  Yard Fest is a gathering of motorcycle enthusiasts, many of them Jeff's acquaintances from years past.  It is amazing the number of bikes that this event draws, ridden by males and females.  I was amazed last year.  This year they even had a band, but Jeff was not able to stay for that as he has a very busy schedule to keep.  Nonetheless, the ladies said Jeff enjoyed himself, and he did not get upset on the way home as he did last year.  Maybe he realizes that if he continues to improve, he will soon be able to at least sit on a bike.  My youngest grandson said “just put him behind me and wrap his arms around me and I will give him a ride”.  I am sure that would put Jeff over the edge, but then, maybe I am wrong.  Jeff did always stretch things to the limit.  Just like our little Jonathon does. 

Jeff enjoys sitting on the front porch with his attendants. He even can be seen occasionally on the front porch standing in his stander.  If you are driving by and he is out there, stop by and say hi – he would love to see you.  He had a few friends visit this summer, and attended a July 4th picnic at my sister's, which he enjoyed.  Most of his cousins on my side of the family were there and he enjoyed listening to their conversations and of course, the endless laughter. 

He is doing very well with this therapy, both at Happiness House and at home.  The attendants work him very hard; he very seldom gets a day off unless he is ill.  His legs are beginning to loosen up, to the point that when he coughs or sneezed they fly off the left side of the bed.  This morning he was laying crossways in the bed.  It is very important that we keep the side rails up when we are not in his room.  Some day he will be able to stand up and take a few steps.  Mark my words.  One attendant says that when she is doing ROM, she counts to ten and when she finishes with nine and starts ten, Jeff says ten.   

Our project for next year is to adapt the pool, so that Jeff will be able to go swimming.  He loved to swim and had been swimming the day that he collapsed.  Unfortunately, we will probably not be able to finish the project until after 2009 swimming season is over, unless we figure out a way to enclose the pool.  Water therapy is available at Happiness House; however, Jeff needs to be totally continent, and at this point accidents still happen.

Well, keep looking; there will be another update as soon as the bathroom is finished.  Thanks for your interest in Jeff's progress, your prayers, and your support.  We couldn't do this without you.  It is the hardest thing that we have ever had to do.  Every day is a new challenge.  Faith, Hope, Love . . . .  Bless you all.

June 11, 2008 – Today is the third anniversary of Jeff's collapse.  It truly doesn't seem like it’s been that long.  I can still vividly remember the moments before and the horrifying minutes, hours, days, and weeks after.  When I reflect back on the past three years I realize what a wonderful miracle of life we have experienced.  Jeff was given minimal chance of survival.  Not only did he survive, but he is breathing on his own, talking a few words, responding to questions, using a urinal, and continues to progress.  The progress is extremely slow, but it is happening.  Everything they told us to expect has happened.  They also told us it would be five years before we knew the final outcome.  We are only a little over half way.  Yes, we do have obstacles to overcome on a weekly basis, but the main thing is that we overcome them.  You play a huge part in Jeff's progress.  Your prayers, well-wishes, and support have helped us get where we are today.  Thank you so much for believing in Jeff's strength.  Thank you for giving him a second chance at life.  Thank you from the bottom of our hearts.

We received notification that the bathroom for Jeff has finally been approved.  We will also be installing a generator to power some of the house in case of a power outage.  Construction should start soon on both.  I will be sure to share our first experience at giving Jeff a shower.  I don't think I’ll mention it to him too much before it happens … he tends to get nervous. 

Jeff has been passing kidney stones and what they call gravel.  Last week we visited a urologist to see if we could get to the bottom of this.  Tests have been performed, and we are waiting for the results.  Hopefully we will find out what is causing this soon, as he is in a great deal of pain when he passes them.  

He continues to participate in PT and OT at Happiness House in Canandaigua.  We are hoping that in the future he will be able to participate in water therapy.  He needs to become totally continent to participate.  We will get there – it’ll just take time.

Thank you to all who sent Jeff birthday cards, emails and MySpace messages.  I always read them to him.  Sometimes he responds, other times he just listens.  

Please, if you are in the area, stop in to visit Jeff. He enjoys company.  I am sure he gets very bored hanging out with Mom and Dad all the time.  I never would have imagined he would turn out to be such a homebody.  I really enjoy spending time with him.  He has quite the personality.  

Bless you all, and please continue to pray for Jeff's recovery.  Faith - Hope - Love.

April 5, 2008 –Wow, it was January the last time I updated the site.  It is so hard to put in writing new information.  Jeff's progress is slow, and that is what it should be.  I do have something huge to tell you, but I have been holding out for fear that if I make it public, he will go backwards, but here goes.

Since mid-January, Jeff has been using a urinal.  We are extremely excited about this because to us it means that he DOES know what is going on.  As our Service Coordinator tells us, the brain just needs to rewire itself and it will take time.  Time is one thing that we have on our side.  Fortunately Jeff was young when this unfortunate incident happened, so he has plenty of time.  Jeff even wakes me during the night if he has to go, but sometimes I am a bit slow in getting up out of bed and I am too late.  Then I get the glare and the vocalizing, as if to say “I am doing my part, where were you?”  (Probably not in those words, but I am sure that is what is meant.)

Jeff seems to be very vocal at times; however, you can only pick up on a couple of words.  Maybe it is best that we can't understand him.  “I'm done” seems to be his favorite.  The staff works him very hard, which is why he continues to progress.  They are wonderful.  They will start at 8:00 a.m. with his ROM (range of motion) and continue right through until 6:00 p.m. when he gets ready for bed.  By 8:15 a.m. Jeff is chanting "I'm done".  He will continue to say this until he decides that they are not going to give up.

He continues to attend Happiness House in Canandaigua for PT and OT twice a week.  He stands in his Easy stand two hours a day, and the attendants exercise him for an additional six hours a day.  He works very hard during the day.  When I tell him he has to work hard so he can go out with his friends, he always responds yes.  Visits from friends are minimal, but a very special female friend visited twice in one week and he was very receptive to her.  As a matter of fact he needed to use the urinal while she was there and he became extremely upset until she said that she would turn her back to him, he calmed down and carried on with his business.  Is it possible that from this life changing experience Jeff has finally gained MODESTY? 

We continue our quest to gain guardianship.  We are in the process of completing the paperwork. If anyone has experienced this and would like to assist me, I would truly appreciate it.  The doctor appointments have been made and then we will go to court.  We are also still struggling to have Jeff released from his student loan.  We have been working on this since July 2005.  We have made progress, but they are still not sure he qualifies. (Do you believe it?) 

Jeff is in dire need of dental work.  But, first we have to consult a cardiologist to find out if he can withstand sedation dentistry.  Then we need to locate a dentist's office that will agree to work with him.  I never realized the trials and tribulations that disabled people have to contend with.  Isn't it enough that they are disabled and trying desperately to live their lives as normal as possible and then they are confronted with all these obstacles every time they attempt to do something?  It is really sad and extremely unfortunate for the disabled who cannot advocate for themselves and do not have someone who can be their advocate.

I would like to thank all the people who have been sending Jeff emails through my email (NYHarleybabe@aol.com) and also his friends who have been leaving messages on his MySpace page (www.myspace.com/just4jeff) that my daughter has set up for him.  I read these messages to him as they come in and he listens and reacts.  Sometimes he cries when I read them.  I always talk to him about the writer of the message, if I know them, but he had so very many friends, and I am not familiar with all of them. 

Jeff will soon be 30 YEARS OLD! He will celebrate his birthday on May 12th.  Wow, I bet he doesn't want to hear that!  I remember on his 27th birthday he told me he didn't want to talk about his age or his birthday. 

Well, I can't think of anything else for now.  Thanks for being patient with me on the updates.  Please continue to pray for Jeff and his quest to recover.  FAITH, HOPE, and LOVE have helped us through this experience, along with your love, support, and prayers.  We get our strength from all of you.  Thanks for being there.  Bless you all.

January 26, 2008 – We hope that everyone had a safe and wonderful Christmas and New Year.  Jeff received quite a few visitors during the holidays.  He had local friends visit and friends from Florida and the Carolina's.  It was such a nice surprise.  Recently we received an email from a friend of Jeff's.  I read it to him and his eyes filled with tears and he looked at me so intently while I read the email.  When I was done, I asked him if he wanted me to tell the friend anything, he smacked his lips, which I think means thank you, or just that he is pleased.  It has been necessary for us to use his body language as a means of communication.  He will sometimes utter some words, but usually late at night. 

Jeff has made some major progress, but unfortunately I don't feel that it is appropriate to write about it and I don't know that he would approve. However, this progress shows us that he does know what he is doing and what is going on – he just has a very hard time sending the message from his brain to his body.  We hope that his recent accomplishment will give him the hope and the desire to continue to try to go further.

We are still waiting on approval for the bathroom, but it shouldn't be too much longer.  He continues to attend Happiness House, and on Fridays he goes to lunch with the attendant and the van driver.  Jeff is a very cheap date … he doesn't eat much. 

Recently the doctor ran some tests, and everything came back fine.  He said that all things considered, Jeff is extremely healthy.  This is great to hear as many people in his condition have many ailments due to immobility. 

Thanks for reading, and keeping us in your thoughts.  Where would we be without you!  Happy New Year.  Maybe this will be the year that we will break records.  Faith, Hope, Love.  Bless you all.

December 17, 2007 – Well, much has happened since my last update.  Jeff met his goal with the stander in no time.  He easily stands two sessions, one hour each daily.  He attends Happiness House only two days a week now.  The staff feels that Jeff is receiving such great in house therapy that it is not necessary for him to go the Happiness House as much.  If they see a decrease in his abilities, they will change the schedule but for now we are at just two days.  His OT has recommended that Jeff get an injection of Botox in his right wrist to help with his contracture.  We are in the process of getting this approved, but like everything else it takes a very long time. 

Jeff's Grandpa Jake Carpenter passed away November 12th.  This was a very hard time for all of us, Jeff included.  It was sudden and we weren't prepared, which made it even harder.  We were not able to include Jeff in all the funeral events, but he did attend the memorial service which was very emotional for him.  He then attended the luncheon after the burial.  Much to our surprise, Jeff's attendants, a very special friend of Jeff's and his uncle, took Jeff's Easy Stand to the luncheon.  My husband had made the comment that he wished all the family could see Jeff stand up.  This was such a special moment.  Jeff stood so very proud and held his head up so high as all the family members came up to him and talked with him briefly.  He was so attentive and so happy.  People who had not seen him for a long time could not believe how good he looked.  Thank you to all who took part in this special surprise.  It meant a lot to all of us, and really meant a lot to Jeff. 

Christmas is now approaching and I keep asking Jeff if he has made up his list.  I always waited until the last minute to complete Jeff's shopping as he changed his list daily, and most of the items on the list were well above my price range.  He hasn't provided me with a list yet, so I have done his shopping already, and I am very sure that what I purchased is not what he had in mind.  

Carolers from our church visited us on Saturday and entertained us with many beautifully sung Christmas Songs.  Thanks to all of you! This is the third year you have visited us and each year your kindness brings tears to our eyes.  Jeff was once in the youth choir and youth group at the church and I think that your visits, help him to remember those days.

The church fundraiser is done. Thanks to all who purchased Smart Cards to benefit Jeff.  All of your donations help.  We would like to get a generator that will start if our power should go out.  I was extremely concerned when they originally predicted the blizzard for this past weekend.  Without power, we not only have no heat, but no water, and no way to feed Jeff.  Hopefully we can purchase one of these generators soon. 

Evan Dawson from WHAM Channel 13 was going to run another segment on Jeff, but I recently took some pictures of Jeff and he was extremely upset.  I don't think that it is in Jeff's best interest for WHAM News to film Jeff at this time.  We wanted to show people that you should never give up.  I hope all of you saw the 60 minute show a few weeks ago regarding the misdiagnoses of people with brain injuries.  Many of the people that they featured had the same type of brain injury as Jeff and were much worse off than Jeff.  You never know what tomorrow will bring.  You just have to have faith.

If you wish to visit Jeff, he is home every day except Wednesday and Friday.  If you find that you cannot visit, please send him a card, an email (to me, NYHarleybabe@aol.com) or a message on his MySpace (myspace.com/just4jeff).   I will make sure that each one is read to him.  He so enjoys hearing from you.  When I read letters to him, I talk about the person to make sure he remembers who you are and usually, he listens very attentively and he tears up.  I am sure they are tears of joy.  He always thought so much of his friends and his family.  If you wish you can even call him, however, depending on his mood, it may be a one-sided conversation. 

We hope that you all have a very Merry Christmas and a Happy New Year.  We will be having Christmas Eve and Christmas Day at our house, so if you are in the area, stop in.  Our door is always open and we would love to see you.  Faith, Hope, Love, and Bless You All. 

October 24, 2007 – In the past week we have taken delivery of an EasyStand.  This remarkable piece of equipment assists Jeff in moving from a sitting position to a standing position.  He has been working with the EasyStand at therapy, but only allotted 30 to 45 minutes a week for standing.  We have been standing him at home since Saturday, starting with one 30-minute session a day, but are already increasing this to 45 minutes as long as he can tolerate it.  Our goal is two one-hour sessions a day.  This therapy will increase his blood circulation which will help with a lot of concerns.  It should also help with his contractures.  We are so very excited and fortunate to be able to obtain this piece of equipment.  It is amazing how tall Jeff is when he stands up.  He enjoys standing and really enjoys looking down on people - something he hasn't been able to do for a couple of years. 

Unfortunately Jeff's bathroom is again on hold.  Hopefully we will be able to proceed around February or March.  What's another couple of months?  I am sure that I will have a lot to share when we attempt to give him his first shower at home. 

   Jeff would like to extend an invitation to his friends to please visit him.  He really needs to know that he still has friends, and that they have not forgotten him.  On Monday, Thursday, Saturday, and Sunday he is home all day.  On Tuesday, Wednesday, and Friday, mid-afternoon or evening is good.  Come alone, come as a group, but please come visit.  We know that it is hard, extremely hard to see him this way.  Believe me, we have to deal with it every day and it doesn't get any easier.  But, where would Jeff be if we didn't stand beside him the past two years?  Please give him incentive, a reason to try harder, to fight for what he had and to gain back some of the life that he once enjoyed - the life he enjoyed and shared with you. Please help him - take time to visit.

   Bellona Memorial Presbyterian Church is selling Smart Cards for $20.  Proceeds from this fundraiser are to help with the ongoing expenses of Jeff's care and recovery.  If you are interested, contact a church member or a member of Jeff's family.  Or stop by the house, visit Jeff, and purchase a Smart Card. 

   Have a great week, drive safely, and PRAY.  Faith, Hope, and Love.  Bless you all.

August 26, 2007 – Well, Jeff has been keeping us on our toes.  It all started the middle of July, when I thought he had blood in his left ear when I was cleaning it.  The nurse came the next day and to my surprise, the left ear was fine, but he had a very bad infection in his right ear.  The doctor put him on an antibiotic and what a mess that created.  Jeff has been affected since he was placed on the antibiotic.  We have made two visits to the ER in three days, and continue to recover at home.  He does seem to be feeling better.  It is really hard when he cannot tell us what is wrong.  We can tell something is wrong by his mannerisms, but it is up to us to figure it out.  He will respond with yes, or no, but it is a guessing game in the mean time. 

He continues to attend therapy at Happiness House.  He also continues to not cooperate with his speech therapist.  We do the same things that she does at home, and he will participate most of the time, but for some reason, he will not participate at Happiness House.  He does seem to be broadening his vocabulary, but not in a very nice way.  He seems to be remembering some of his before-TBI words.  And I must say he uses them at the appropriate times.  He has been attending some summer activities with his family, and he does very well at them. 

We should be able to start construction on his bathroom soon.  This will be another adventure, since none of us have ever given him a shower.  I think that bathing suits will be required for the staff on shower days. 

We have decided to sell Jeff's car. If anyone is interested, please call us at 585‑526‑5680 and we will discuss it further.  It is a 2003 Mitsubishi Lancer Evolution, loaded, with many aftermarket parts, and extremely low mileage.  We really wanted to keep it for Jeff so he would be able to drive it again someday, but we have decided to sell it and he can just get himself another one.  It has been in storage for the past two years and has been well maintained. Please call if you are interested or know of someone who is. 

I will try to write more often. It seems as though progress is slow until we look back at the daily journal kept by the attendants and find that much progress has been made in the last two years.  Remember, FAITH, HOPE AND LOVE is what gets us through each and every day.  It is also important to never, never, never give up.  We have found that if you keep fighting, it will certainly be rewarding.  Bless you all.

July 21, 2007 – Sorry for the delay in getting you an update.  I seem to be having a very hard time trying to accomplish everything that I need and want to do these days. Somehow, these updates just don't seem to be getting done. 

Jeff is just getting over an ear infection and unfortunately suffering some side effects from the medication, but that also is improving.  Otherwise, he is doing great.  His Aunt will be returning to her duties with him after taking a weeklong vacation, which he has not dealt with very well.  He really cares deeply for the attendants that work with him, and definitely misses them when they are away.  He continues to attend Happiness House for therapy, which has its ups and downs.  Some days he excels and others he sleeps through the session.  We are trying to get him to be consistent in his responses, but Jeff usually does things when he wants to – just like the old Jeff. 

We had a wonderful Fourth of July with my sisters.  Our festivities were all inside or on the porch, and as usual Jeff was the center of attention.  When isn't he?  He is getting more and more responsive with his speech.  He often will respond yes or no, and now if you ask him if he is okay, when he coughs or chokes, he will respond, "no I'm not."  He seems to smile more now, and I swear he rolls his eyes sometimes at some of the things that I say. 

Hopefully in the next few months we will be working on his bathroom, and he will be able to have showers instead of the bed baths.  He hasn't had a shower since July 26, 2006.  At the time of this writing, he is in is bed talking to me.  (Please note it is 11:58 PM on a Saturday night.)  He must think he’s at the bar.  Generally he is sleeping by 9:00, but he slept most of the morning, so he apparently is not tired. 

Last weekend, his attendant took him to a local motorcycle event.  At first he did not want to go – he would not sit up in his wheelchair, and he hung his head down when we got there.  Shortly after arriving, his friends came over and talked with him and he lifted his head and enjoyed watching the activities for about two hours.  When it was time to go home, he again would not sit up and hung his head down.  He even shed some tears.  So if you are his friend, and you are reading this, please come to visit him.  He really misses you guys.  You will find that if you visit frequently he will talk with you. 

We have been receiving emails for Jeff.  We read them to him and he listens very closely.  After we have read the email, we ask him if he wants us to read it again.  He will usually say yes.  I usually talk with him about the person after reading the email, and he tries desperately to join in the conversation.  Soon he will be talking our ears off. 

It shouldn't be too much longer before we get the Sit to Stand, and hopefully we will be able to take a video of Jeff standing.  You will be amazed at the changes he has made.  Jeff's recovery has certainly taught us that you should never give up, to have FAITH, and that anything is possible.  Always HOPE for the best and make sure that you express your LOVE to those you care about.  Bless you all and thanks for your prayers.  They are certainly helping.  Take care.

June 11, 2007 – Today is a tough day for us – it is the second anniversary of Jeff's collapse.  Two years ago today, our son was a happy, fun-loving, nice looking, young man, too busy with the fun things in life to make a personal commitment to anything.  We now look back and thank GOD that he lived each day to the fullest, that he did things on a whim, that he didn't make any commitments.  And that he was home when he collapsed.  We are thankful that we still have him, because six hours after his collapse they told us he wasn't going to make it.  Jeff is a fighter and he’s made wonderful progress and continues to do so as much as can be expected with his condition.  Yesterday, he started moving his head back and forth to say yes; however, this morning, he moved his head back and forth indicating yes, but clearly said no.  

He is alive, he is breathing on his own, he is moving his head on his own, and he is responding to questions that you ask.  He is speaking – not a lot – but his vocabulary is growing, slowly.  He has a wonderful personality, just as before, and is a pleasure to spend time with.  He will continue to get stronger and gain more skills – it is just going to take time.  They said it could be five years before we knew the outcome, and we are not even half way.  As a matter of fact, he has only been receiving intense therapy since mid-December and look at the wonderful progress he has made since then. 

We are so very thankful for the many people who pray for Jeff, who have donated money, time, knowledge, and many, many other services to help us take care of him.  He is at home, and he is much more content being there.  We do wish that his friends would visit more often.  We feel that this may help his recovery, but we also understand that life goes on and people are extremely busy with their own lives.  If however, you have five minutes, please give Jeff a call.  He - imagine this - loves to talk on the phone.  He mostly will listen, but will utter a word now and then.  Write him a letter, email a letter to me and I will read it to him, but please let him know that you have not forgotten him.  At this point in time, visitors have become mostly family members and those that take care of him.  We do not take him on too many outings, as we do not want him exposed to germs that may cause him to become ill.  I am sure that he misses all of you, as you miss him.  Jeff will never be the same Jeff that we knew and loved, he will have serious limitations, but he will be a new Jeff that we have grown to love and enjoy as much as we did before.  He is extremely fun to be with.  He has good days and bad days, but the good outnumber the bad by far.  He still likes to watch MTV and as a matter of fact, I am beginning to enjoy some of it.  I am trying to get him to like country music, but he just falls asleep.  I don't know if that is a good sign or a bad sign.  Please stop in when you are in the area - we would love to see you.

We have had wonderful response for van drivers, but could always use more.  If you would like to help, please give me a call at 585-526-5680 after 6:00 p.m.  We also want to thank you for taking the time to read these updates.  It’s amazing how many people get upset when I don't update regularly.  Our construction is almost complete and the finishing touches are underway, so I should have more time to update.  However, I have many boxes to unpack. 

Please continue to pray, to read the web-site, to help others in need as you have helped us, and to visit when you can (call first to get his therapy schedule so he will be home).  We miss you.  Bless you all.

May 25, 2007 – I hope that everyone is enjoying this unseasonably warm weather.  I am sure that as soon as we get our air conditioners out of the basement, it will cool down.  Jeff and I are recovering from a cold. Unfortunately, I infected Jeff and we are both suffering.  Hopefully we are on the mend.

I have wonderful news.  Last week on Thursday, Jeff's speech therapist was asking him if his name was Jeff, as she always does.  She continued with her therapy and all of a sudden Jeff blurted out, "I'm Jeff."  From what I hear, they were all astonished, he then said it again.  We were so excited to hear this.  It was like he had muttered his very first words.  He does know what is going on.  Two days later, on Saturday, I was talking with him and I asked him if he was done.  He tried desperately to speak to me – his lips were moving, his jaw was moving and sounds were coming out, but we could not understand him and then he said "I'm done."  The speech therapist and I looked at each other and said "He's done."  He smiled the biggest smile, and so did we.  It was so exciting; I cannot even describe the moment.  Nothing has been said since, but tomorrow is another day, and maybe another phrase.  We just have to be patient and not pressure him.  He has to do these things when he is ready. 

Jeff has been fitted for foot/leg braces, and he has new shoes.  Again, they are not what he would pick out, but there will be plenty of time for shopping later.  Actually, I still have all his clothes and shoes packed in boxes, waiting for him to be able to wear them again.  Someday!!!  He seems to get a bit irritated with his braces, some days he does better than others.  The braces will help correct the slight foot drop that he has experienced and should help the stiffness of his ankles.  The therapists and the attendants work very hard to help his contractures. 

Jeff has a problem with his feet sweating, so we have foot spray for his feet.  When we apply this, we cover his face with a wash cloth so that he doesn’t breathe in the spray.  A couple of days ago, he pulled the wash cloth off his face both times it was placed there.  Now he didn’t do this when the attendant was watching, but waited until her back was turned.  Doesn't that sound just like Jeff?

Our volunteer driver list has filled up quickly, but we still need someone on a call-in basis and for Thursdays.  Please call 585-526-5680 evenings, if you are interested.

Please enjoy the holiday weekend.  Be safe and pray.  Faith, Love, Hope.  Bless you all.

April 24, 2007 – I am trying to get back on track with the weekly updates, hopefully I won't repeat myself.  Jeff continues to remain healthy.  He had a checkup at the doctor's office yesterday and handled it extremely well.  The doctor was pleased with his vitals and how well he looked.  Believe it or not Jeff weighs 165 pounds and is a bit chunky around the middle (don't tell him I said that).  His attendant took him outside Saturday for a walk, but decided she was too out of shape for that (she is 19). He then sat on the front porch and enjoyed the beautiful weather. 

We need your help again. It seems like we are always asking for something.  Our attendants can no longer drive the vehicle that transports Jeff to Happiness House for therapy four days a week.  We are looking for volunteers to drive our van to transport Jeff.  The attendant will be responsible for Jeff, the volunteer needs only drive the van and unfortunately wait for his session to finish and then drive him back.  If you are interested or you know someone who is interested, please contact me at 585-526-5680 evenings after 6:30 PM.  It took us so long to get him into Happiness House; we really don't want to discontinue this wonderful service.

Speaking of Happiness House, his Physical Therapist is going to check out the boots that he has been wearing since July of 2005 and possibly get some better ones.  Jeff is suffering a bit of foot drop on both feet. I don't feel it has worsened, but it’s definitely not getting any better.  The Speech Therapist continues to work with his mouth and face in an effort to help him talk and swallow properly.  Jeff, however, plays shy with her.  Can you imagine Jeff shy?  Occupational Therapy continues to work with his upper body and you can see the difference in the few short months that he has been getting this extensive therapy.  His wrists have more mobility and his arms are down much of the time.  His attendants continue the Range of Motion and exercises before and after Happiness House.  Believe me, everyone who works with Jeff – including Jeff – gets their exercise daily. 

We hope you are all well, and please remember to enjoy your family each and every minute.  You never know what tomorrow brings.  Faith, Hope, Love, Bless you all.

April 18, 2007 – I am so very sorry for neglecting you for such a long time.  People have been contacting me and asking me if something is wrong.  Everything is great.  Our house is still under construction and we are reaching the finishing stages where many decisions have to be made.  I will be glad when it is over so I don't have to think so much.  We were able to eat dinner in our unfinished huge family room.  It was so nice, even without painted walls and with a plywood floor.  The walls are now painted and the gas fireplace is being built.  The windows and doors are being stained and the floors will be in place within the next couple of weeks. 

I bet you want to hear something about Jeff.  He is doing fine.  He is still going to Happiness House in Canandaigua for therapy four days a week.  As much as we can tell he does enjoy it.  I believe, from what I hear, he is beginning to relate to his Speech Therapist, but still will not talk with her.  He does, however, communicate with his other therapists occasionally.  He did very well during Easter dinner.  He sat at the head of the table with Grandpa Carpenter sitting at the other end.  It was a very long table, but we were all in one room and we were a family.  He spent about three hours with us, and then retired to his nice quiet room, until his nephews decided they wanted to help the attendant with his cares.  I am not so sure that Jeff's enjoys their help as much as they enjoy helping. 

We have decided to increase Jeff's home therapy, which seems to be helping him.  We also tried a different toothpaste, and he has definitely made it known that he doesn't like it. 

I would like to share a story about a visit Jeff received a couple of weeks ago.  One of his friends came to visit with his girlfriend.  The entire time they were there, Jeff would look at the female friend and smack his lips for a kiss.  I told him jokingly that she could not kiss him with her boyfriend there.  He continued to smack until they left.  They visited for about two hours.  It was a lovely visit.  The next day, I was telling his attendant what he did and he looked at her and gave her the biggest grin.  Jeff knows exactly what he was doing.  He was trying to steal the chic from one of his best friends.  Again, I repeat myself, some things never change.  Someday, Jeff will be better able to communicate with us, but right now he can only use body language.  His vocabulary has not increased much, but the words that he is able to say are becoming clearer.  Sometimes we forget the progress that Jeff has made, so looking back in his journals or watching the WHAM video on his web site reminds us that we are heading in the right direction.  The rate of speed is a bit slow, but there is still progress and as long as there is progress, there is hope, faith, and love. 

Please visit when you can. If you want to make sure Jeff is home, feel free to call first (585-526-5680).  Most of all, please pray.  Please remember the families involved in the Virginia Tech disaster in your prayers.  Faith, Hope, Love.  Bless you all.

March 18, 2007 – Jeff is doing very well.  He continues to use the Sit-to-Stand at Happiness House and has progressed to 70 degrees, which is wonderful.  We are in the process of applying for this piece of equipment for our house which will enable Jeff to use it several times a day. 

His participation with Speech is not going as well.  Jeff seems to keep his eyes closed during his speech sessions, but his therapist is not giving up.  She continues to find ways to reach him.  I feel that as soon as he is comfortable with her, he will open up and work with her.  He does, however, talk as soon as he leaves her room.  Thank goodness the other therapists have witnessed this.  Most likely, this is just Jeff being Jeff.  He continues to humor us with his little quirks, i.e. sighing when we do something that he doesn't approve of, glaring at us if he wants something and we do not comply.  And of course, there are the kisses, which just melt your heart.  He loves to have his head, knees and back rubbed and he finds ways to make his attendants think something is wrong so that they will rub his head, knee, or give him a back massage.  Oddly enough he doesn't try this with me as he knows that Mom doesn't buy it. 

I have to share a remodeling story with you.  We are making our garage part of our house so that Jeff can join us in most of the house and not have to stay in his room.  In doing this, we are making a laundry room as Jeff creates a lot of laundry duties.  My husband, who works nights, called me at work one day to ask me if I wanted the Laundry Room door 36" wide so that Jeff could go into the Laundry room.  My reply to my husband was, "Jeff never did his own laundry before this happened, what makes you think that he will do it now?"  Well, the door to the laundry room is going to be 36" and I guess we will just have to wait and see if eventually Jeff will be doing his own laundry, and hopefully he will do ours too. 

Have a great week, enjoy the upcoming weather; I hear that it is going to be warm.  Keep the prayers coming – they are certainly helping us all.  Faith, Love, Hope.  Bless you all.

March 4, 2007 – I have wonderful news to report.  Jeff continues to improve in all areas with his intense therapy at Happiness House.  He is beginning to warm up to the Speech Therapist, but didn't want anything to do with her the first few days.  He is doing so well with his Physical Therapy that this Tuesday they are going to introduce him to the Sit-to-Stand chair.  This chair will safely enable Jeff to move gradually from a sitting position to a standing position.  We can't imagine how this will feel to Jeff.  He hasn't been in a totally vertical position since August of 2005 at Parkridge Hospital.  Jeff has also been sitting on the edge of his bed.  He feels his bare feet on the heated floor and he sits very tall. He occasionally leans to the right, but other than that he is doing very well with his balance.  He continues to talk with us, answering most of our questions with a yes or no.  We are trying to find a way to enable Jeff to communicate with us; in the mean time he is able to get his point across.  Jeff's new therapy schedule keeps him very busy.  Jeff is able to accept visitors on Monday, all day and evening.  Tuesday's he is available until 1:30 p.m., then again after 6:00 p.m., Wednesdays after 2:00 p.m., Thursdays after 2:00 p.m., Fridays after 1:00 p.m., and anytime on Saturdays and Sundays.  He is available any evening, but please keep in mind that he generally likes to settle down for the night around 8:00 - 8:30 p.m.  Please continue to pray for Jeff's recovery, he is making steady, but slow, progress, which is what he should be doing.   If it weren't for all of you, Jeff would not be this far in his recovery. How can we ever thank you?  Faith, Love, Hope.  Bless you all.

February 7, 2007 – I hope that you are all able to keep yourselves warm during this cold spell.  We are spending a lot of time in Jeff's room as his floors are heated.  Jeff is going to start speech therapy as early as next week.  We thought that he might have two sessions a week, but today, they told us that they are going to schedule him for four speech sessions a week.  They have already increased his OT sessions and are now going to increase his PT sessions.  They have suggested that we start the process of obtaining a sit-to-stand chair so he can have it for the near future as he will be ready for it.  We are also going to attempt to get a lift for the pool so we can provide water therapy during the summer months. We are so excited about the speech.  Finally someone can see the potential that he has.  Someone believes that he know what is going on, but just cannot get his body to work.  Someone besides his family has FAITH in Jeff.  Jeff works very hard every day, and is very exhausted by the end of the day.  This past weekend, I believe he tried to get out of bed.  Or maybe, he did get out of bed and was getting back into bed when I found him.  Sunday morning, I heard him making noises about 6:30, so I ventured into his room to check on him.  I had forgotten to put the foot rail up on the left side of him bed the night before.  Jeff had his left foot close to the floor with his toes touching the floor, his right foot was hanging off the bed, and he was totally sideways in the bed.  Of course, I called for my husband, as I wanted someone else to see him.  We should have taken a picture, but didn't think of that.  He is progressing so much that everyday seems like something new happens. 

We continue to decorate his room, with pictures, and tokens from his past.  We have put his stereo in the room and my son-in-law hooked it up for me so we could have the big speakers for the DVD's, but Jeff doesn't like the sound too loud.  This week, the second phase of construction has started.  We are converting our garage into part of the house.  It will be a laundry room and add on to our existing family room so that when we have the family over, we can all (including Jeff) be in one room.  If we try it now we have to put Jeff in the entrance way, and that really bothers me.  He is part of our family and he should be able to be with us.  So far the garage has been gutted and the windows have been ordered.  My dining room will now become a family room until this phase of construction is complete. 

Please stop by to visit with Jeff, to see his new room, and to enjoy his accomplishments.  He does have a very busy daytime schedule, and I will let you know this schedule as soon as I am notified of it.  He is home in the evenings and on weekends.  Faith - Love - Hope.  Bless you all.

January 26, 2007 – I would like to dedicate this update to my wonderful mother who passed away on January 23, 2007.  She is now an angel watching over Jeff, along with many other family members who have passed away.

I am sorry that I haven't given you an update, but for the past four weeks my attention and my dedication has been divided between my recovering son and my terminally ill mother.  I have sat down many times to update the site, but my thoughts just weren't there.  I feel now that I must do this, not for me, but for you, as you are the strength behind me.

Jeff's room is almost complete, but patience is not my best virtue, so on Saturday, January 21st, we moved Jeff into his new room.  It is wonderful, and much more that we expected.  Everything looks so great, and we haven't even started to decorate the walls.  My wonderful neighbor is staining the doors and he has now moved into the dining room.  Tomorrow I hope to put the border up.  Jigsaw puzzles decorate the table in his room.  The room is so bright that we have to close the blinds so that Jeff will open his eyes.  It is so quiet in his room.  He has his privacy, yet he is just a second away if he needs someone.  It is terrific.  We waited a very long time for this, but it was definitely worth it.  None of this would have happened without you.  You prayed for us, you donated funds, you supported us in every way that you could and it finally happened.  Thank you so very much.  Words cannot begin to express our gratitude, and I am sure that Jeff feels the same way.

Jeff is doing very well.  We have had a very rough couple of weeks, and Jeff has been a bit tense during this period.  He shares our grief, but unfortunately he only can let us know with his tears.  He tries to tell us, but most of the time we just cannot understand him - frustrating for all of us.  The new program has been underway for about six weeks and what a difference it has made.  The attendants are providing extensive therapy on Jeff every day, so even if he is not scheduled for professional therapy, he is getting our home version of therapy.  We are finally going to accept delivery of a lift/scale so we can weigh him.  The first time he will have been weighed in six months.  By the way, he has been home for exactly six months today, it certainly doesn't seem that long. 

Our goal at this time is to help him to extend his arms and legs, to lessen the contractures so that we can get him into a chair that will help him to stand up.  On Monday he was given a modified barium swallow test at Clifton Springs Hospital.  He is swallowing, but too many times which is causing him to fill his stomach with air.  This is due to the fact that he is not used to texture.  His epiglottis is also not moving as it should.  With extensive speech therapy, concentrating on his motor skills, this can develop and he may be able to have the test again in six months.  Hopefully we will be able to get speech therapy for him at Happiness House in the near future.  He does get speech therapy at this time, but only once every six weeks and that certainly is not extensive. 

Again, I wish to thank you for all your support,  we certainly could not be where we are today, without your help.  I also wish to again apologize for neglecting you for several weeks.  I certainly will try to be more attentive.  Please continue your support, we need you.  FAITH, LOVE, HOPE.  Bless you all.

January 1, 2007 - HAPPY NEW YEAR TO ALL OF YOU!  As I write this update, Jeff is sleeping in, something that he really likes to do when his attendants aren't around.  The contractors are in his room finishing up the spackle on the walls; the ceiling is already completed.  Painting is scheduled to start on Thursday and should be finished by Saturday if all goes well.  Then the floor will be installed, the moldings will be placed and we will be moving in.  We are anticipating moving either the weekend of the 13th or the 20^th - we are finally there!  The doorways have been widened and everything is looking good. 

Now, let me tell you about Jeff.  He continues to do well.  His dad had a bug last week and I think Jeff may have a touch of it, but he is doing well.   His OT and PT continue at Happiness House in Canandaigua and that is going well.  He enjoys the ride up and back and I am not sure if he enjoys his therapy, but you can really see the difference.  His attendants are giving him intensive Range of Motion twice a day, and his mobility has increased immensely.  He will not cooperate with his father as far as moving his limbs, but that is a power struggle that has gone on since the day Jeff was born.  Jeff, with the recommendation of his attendants, is growing a mustache and a goatee.  He looks really good with it, but his nephews think he looks funny.  He is becoming much more verbal, answering questions with either yes or no.  His speech therapy should be starting soon, we hope.  He enjoys looking in the mirror at himself (again, some things never change).  He seems to be smiling more and more.  He did very well with the family on Christmas Eve and Christmas Day.  One thing that seems to amaze me is that he no longer likes loud noises.  He hates the music loud, or the TV, and becomes extremely upset if someone raises their voice.  I remember when I could hear his car stereo when he was a mile down the road.  All in all, I am confident that the year of 2007 will bring us joy and happiness in regards to Jeff's recovery.  We had set a goal that by Christmas, he was going to be able to sit on the edge of the bed and pivot to his wheelchair without the aid of a lift, with help of course.  Well, we didn't make it in 2006, so we will again try for 2007.  We never did say what Christmas. 

Please continue to pray for us, as we continue to pray for all of you.  We wish you health and prosperity in the New Year, and hope that we will be able to give you wonderful progress reports.  FAITH, HOPE, LOVE.  Bless you all.

December 19, 2006 – I would like to start this update by wishing you all a very happy and safe holiday season.  Please remember to treat each day as if it were your last.  You never know what tomorrow will bring.

Things are changing around our house in more ways than one.  The construction is progressing.  The outside is completed with the exception of the deck and porch.  The inside is looking good.  The ceiling was sheet-rocked today, with the walls to follow.  It looks as if we are going to be painting and staining the room with the assistance of our wonderful neighbor.  It won't be much longer and Jeff will be in what we are calling "Jeff's pad".  I am trying to decorate the room in something he will like, but I find myself putting in a bit of country here and there – sorry Jeff. 

We started the Consumer Directed Personal Assistance Program (CDPAP) on December 9th.  We have the attendants that we interviewed and hired (we are the Supervisors), but they are actually employees of the Center for Disability Rights (CDR) in Geneva.  Jeff has adjusted very well to the new staff (one of them being his aunt) and his new daily routine.  He is kept busy every minute of the day with Range of Motion (ROM) or some type of therapy. 

Jeff will be going to Happiness House in Canandaigua for his therapy starting December 20th.  He will go twice a week for Physical Therapy (PT) and Occupational Therapy (OT), and as soon as they can make arrangements, he will receive Speech Therapy (ST).  In addition to the therapy that he will receive at Happiness House, he continues to receive Independent Living Skills Training (ILST), Community Integration Counseling (CIC), and Massage Therapy (MT) all at home.  He is a very busy guy.  He continues to remain healthy, and is becoming extremely vocal most of the time.  My sister was looking at some pictures yesterday, and was talking with Jeff about the pictures.  She found a picture that she did not recognize the person in the picture and asked Jeff who she was.  He clearly stated her name.  When I arrived home from work, my sister asked me who the person was in the picture.  I told her, and she was overwhelmed with excitement.  She said that is exactly who Jeff said it was.  It amazed both of us that he was able to recognize the person in the picture and speak the name so clearly that she could understand him.  He has not seen this person in ten months.  It is moments like this that give us the strength to continue to fight each and every minute of every day for his recovery.  During the past week, he has also said, "Hi, Good Night, I Love You, I know, Oh No, Sheila, Mom, No" and probably some words that I am not remembering at this time.  He has also learned to blow his nose on command, and for one attendant he will raise the knee on his left leg. 

One thing I might add; Jeff is getting extremely spoiled with the new program.  I am sure that he is soaking up all the attention.  I often think back to when he was in the critical care unit in Sayre, PA, and his many friends came to visit and some of them even stayed by our side for a week at a time.  To pass the time, and give us something to do, we all wrote pages in a journal.  Many of his friends remarked about how he like attention and they hoped that he was getting enough now.  Well guys, I am sure he is getting enough attention now, and I think that he is looking up at us and grinning from ear to ear.  And I do believe that in time he will remind us of all the attention that he has been given during his recovery. 

I would like to mention to his friends that we know how hard it is to see Jeff like this, but he needs each and every one of you to be supportive and to visit him as much as you can.  I am sure that he misses you greatly and if he could I am sure that he would tell you so.  Please do yourself a favor.  Take a deep breath and come to the house even if for only a short visit.  After the first time, it will get easier.  Our door is always open to each and every one of you.  We also miss you.  Someday we will all have to get together and read your journal passages to Jeff.  I have tried, but I get too emotional, so it will have to wait until we all get stronger. Maybe someday Jeff can read them to us.  Let's pray that he can continue to be strong and fight for the life that he once had, or even a part of it. 

Merry Christmas and Happy New Year.  FAITH - HOPE - LOVE.  BLESS YOU ALL. 

December 10, 2006 – Jeff continues to do well.  He had is eyes examined yesterday.  He had Lasik surgery five years ago and Dr. Marchenese recommended that he continue to have his eyes examined on a regular basis.  His eyes are healthy, and they do feel he has eyesight in both eyes, but they are not sure how much.  The Doctor did run a test and it showed that he is near-sighted, but that test is not always accurate.  Of course, Jeff would not open his eyes the entire time we were at the Eye Care Center. 

    He continues to recover from his cold, and only has a slight lingering cough as evidence that he was ill.  Today was the first day of the CDPAS program, where we hire the attendants through CDR.  The attendant that took care of Jeff today was very good with him.  He was so vocal today that I couldn't believe it.  He did give her a hard time with the ROM, but he is just testing the waters.  They seemed to have a really great day, let’s hope tomorrow goes as well.  We have four attendants that will be caring for Jeff, with more as fill-ins.  The response through the CDR program has been terrific.  With this program, we train the attendants to do whatever we want them to do.  This program will allow us a bit more freedom, as we will not need to give his meds and water flushes, the attendants will be able to do this. 

    The addition is progressing.  We are hoping to see sheet rock in the next few days.  It is going to be so wonderful to have him in a room where there is actually room for all of his equipment and supplies in one place.  We don't actually have a completion date, but it won't be long now. 

    Have a great week.  Faith, love, hope.  Bless you all.

November 28, 2006 – We hope that you all had a wonderful Thanksgiving with your families and loved ones.  We were able to enjoy the holiday with Jeff at HOME.  The first home holiday in a few months.  Jeff joined us in the family room as we sat around the room and ate with our plates in our laps.  (Remember, Jeff is occupying the dining room for a bedroom at this time.)  He tolerated the smells, the noise, and the confusion without any concerns.  It seemed nice to celebrate a holiday at home again, with our family.  Many family members who had other plans for dinner, stopped by to visit during the day. 

Jeff is now fighting off a cold.  He is doing extremely well with it.  The stuffy nose has improved, and his cough is strong, so we are hopeful that it will not develop into pneumonia.  He is a strong guy and should be fine.  His room is coming along fine.  The siding is going up on the outside.  The framework for the bathroom and the closets are done on the inside, as well as some of the wiring.  Estimates have been obtained for the heating system, and we are deciding on a type of flooring.  So many decisions to make, hopefully we are making the right ones for Jeff's health. 

We have decorated Jeff's room for Christmas.  When we placed the fiber optic tree that he had in the Nursing Home on a shelf near the foot of his bed and turned it on, he seemed to be a bit concerned.  Did he remember it from the Nursing Home and did he think he was there?  I talked with him about it for a bit and reassured him that he was home and we had brought the tree with us, he seemed to calm down, but is still a bit tense when we first turn in on in the evenings.

Ironically, I recently found a list of items that Jeff wanted to purchase for his EVO.  Even now, he still manages to provide me with a Christmas list that far exceeds my budget.  Some things never change.  This year he is getting a very expensive new bedroom, I sure hope that he appreciates it.

Have a wonderful week, and please stop by to visit with us when you have a moment.  Jeff enjoys visits from his friends; I think that you will be amazed at how well he is doing.  FAITH, LOVE, HOPE.  BLESS YOU ALL.

November 18, 2006 – We have had a bit of a rough week at our house.  Jeff was not feeling well, and it was determined by his visiting nurse and the doctor on Wednesday, that a trip to the ER might be the best treatment. Upon arrival at GGH, Jeff was given every test under the sun and of course, nothing showed up.  It is extremely difficult to know what to do when you know that he is uncomfortable, but you haven't a clue what might hurt.  It was concluded that he most likely had gastroenteritis (a.k.a. stomach virus) and he should not eat for a couple of days, only water.  Well, the next night I was about to send him back to the ER as he moaned in pain, when my sister suggested a heating pad for his stomach.  Of course, I did not have one, and where was I going to get one at 11:30 PM, so I improvised with a heated wet towel and a plastic bag.  In less than 30 minutes Jeff was sound asleep and not heard from again until morning.  We have started to feed him again at a very slow rate, which will be increased daily as long as he can tolerate it. He continues to enjoy the heating pad (I went to the store on Friday and purchased one) on his stomach when he is in bed, but he does feel much better.   

Other than this episode, Jeff is doing well.  The construction continues to make progress, but will not be done for Thanksgiving, so dinner will be enjoyed with our plates on our laps.  No matter how dinner is served, we certainly have much to be thankful for this Thanksgiving.  Please enjoy your time together as you and your families gather together during this holiday season.  You never know what tomorrow is going to bring. Faith, Hope, Love.  Bless you all.

October 30, 2006 – Time is getting away from me, but I will try to keep up as I know that you look forward to reading this on a weekly basis.  Jeff is doing well.  We have been in the process of changing his feeding schedule and we have finally made it after working at it for three weeks.  He now is fed from 7:30 PM to 6:00 AM, at a higher rate, but with less water mixed with the food.  We have increased the volume of his four water flushes during the day and he is tolerating this new schedule extremely well.  This will enable us to be able to take him places at different times during the day.  It makes it easier for the therapists and the aides to care for him.  Plus, we recently found out that the aides cannot assist him if we are not at home to turn the feed machine off. 

We made a visit to the Eye Care Center in Canandaigua. Jeff worked there for 10 years before he became ill.  A few of his co-workers were there to visit with him, along with Dr. Marchenese, his wife, and his son.  Jeff made the trip with no problems and was very relaxed while we stood in a circle around him and talked.  We will be taking him back in the near future as he needs to have an eye exam. 

Construction is moving right along.  As I write this, we have no roof on two rooms of our house.  We are praying that it does not rain before they are able to complete the work tomorrow.  The addition has four walls and the trusses are in place.  It is amazing the amount of work two people can complete in the course of eight hours.   My neighbor has been taking pictures of the progress, and as soon as I can figure out how to email them to Mike (he is the one who is maintaining this web-site), we are going to try to share them with you.  Hopefully I will be able to fit that in sometime soon. 

We had our first power outage this past weekend.  I used our emergency NYSEG number and our power was restored in two hours.  The only problem we encountered was the lowering of the bed.  It is amazing how spoiled we are by push button controls.  None the less, without too much confusion, we figured out a way to lower the bed, and everything was all right.  A phone call was made this morning to our wonderful medical supplier to obtain a proper crank so that the next outage will be a bit better.

Have a great week.  FAITH, LOVE, HOPE, BLESS YOU ALL.  Without your support, we would not be able to have Jeff home, nor would we be able to complete an addition to make his life as normal as possible.  We greatly appreciate your prayers, thoughts, cards, visits, and monetary donations.  You are the strength behind us every single day.  Thank you so very much.   

October 15, 2006 – I haven't given you an update in a couple of weeks and I am truly sorry for that.  It is so hard keeping up with everything.  Jeff is doing well.  They continue to adjust the degree of the elbow and knee braces, and he continues to tolerate the adjustments.  He continues to be vocal, some days more than others.  We tried to make a change to his feeding schedule last weekend, but it did not go well at all.  We are now just going to increase the flow speed and decrease the hours, so that eventually he will only be fed during the night hours and not at all during the day, except for water flushes and meds.  This will enable the aides and therapists to work with him without the confinement of the feeding equipment.  This will also enable us to take him on road trips.  This past week, he has been to Rochester – you know he just loves Rochester – and he has been grocery shopping.  I am not sure that he enjoyed that, but he tolerated it well.  Last Sunday he was outside most of the day, he went for two walks, sat in the shade and looked at the construction, and watched his nephews ride on a motorcycle, with their father’s help.  We try to include him on as many activities as we can. 

Unfortunately, we are going to be making a change in our aide schedule.  In the next two to three weeks we will be needing new aides, so if you know anyone who is interested, or if you are interested, please give me a call at 585-526-5680 (after 7:00 PM please) and I will explain more to you.  It will be a major adjustment for Jeff, but it is something that needs to be done for his safety.  Hopefully the new program will work our better for all of us. 

We have noticed the past couple of days, that Jeff seems to have more mobility in his hands.  He has begun to make a fist and release, unfortunately not on command, but maybe soon.  He is moving his legs on command. 

The construction is moving along slowly but steadily.  At this point in time, the basement walls are standing, but we are waiting for the basement windows to arrive.  This was a last minute decision, so we have to be patient.  We are thankful that we did not get the two feet of snow – that really would have created a problem.  We are going to try to put up some construction pictures here on the site for you to view within the next couple of weeks.

Please continue to pray for Jeff's recovery.  Faith, Love, Hope.  Bless you all.

October 1, 2006 – Jeff has had an up-and-down week.  He tends to continue with his upset stomach, but I believe that it is his nerves as we continue to work diligently with the elbow and knee braces.  We had to call the doctor, who took him off most of his medicine as he felt it wasn't necessary.  Different doctors have such different ways of treating.  I truly do not see any change with the decrease of meds, so I guess the doctor was right.  The doctor also ordered blood work, so we should have the results from that early this week. 

    Construction has started.  They started the morning of September 30th, and as far as I am concerned, have made great progress.  They removed all the shrubs in front of the house (where the ramp will be), dug the hole for the basement underneath Jeff's new bedroom, and are preparing for the footer.  I believe that will be done tomorrow, Monday, October 2nd. 

Jeff's aide took him outside today so that he could watch them work, but the New York weather did not allow him to stay out for long as it started to sprinkle, so we brought him inside, then of course, it stopped. 

    Jeff misses his friends and we do hope that you will visit soon.  Our door is always open and someone is here all of the time.  His therapy sessions last for only 30 minutes, except his massage on Wednesday at 9:30 AM, which lasts for one hour, so feel free to visit anytime that is convenient for you.  He does, however, go to bed at 8:00 PM.  Please visit with him, he still needs your support. 

We thank each and every one of you for your continued support, and pray for you each day.  Please continue to pray for us.  FAITH, LOVE, HOPE.  Bless you all.

September 22, 2006 – Jeff has been extremely busy the past several days, I am having trouble keeping up with him.  The beginning of last week he was feeling a bit under the weather.  He seemed to have a stomach bug which hung on for three to four days, but he is much better now.  This week, he received two elbow braces and one knee brace.  The therapists have been here several times this week, starting with the knee brace on his right knee and then with the elbow braces on both arms.  He is tolerating the braces extremely well.  The braces are designed with a dial, so that when they are adjusted they will help work out his contractures.  He wears these during the day, and they have special boots for his feet, and wrist braces for his arms and hands that he wears at night.  His therapists are very pleased with his progress, and we all hope for the best.  Our goal:  for him to be able to sit on the edge of his bed, stand, and pivot to move into his wheelchair.  Deadline:  Christmas.  He has a lot of work to do to accomplish this.  Did you notice this is OUR goal and not his?  Somebody has to set the goals.  Even his speech therapist was pleased with his cooperation today.  She has given us a list of tasks to help him with daily. 

The van is on the road. It spent a few days in Rochester to have the wheelchair tie-downs and the safety harnesses installed.  Tonight we went cruising.  I was at the wheel, my sister was in the navigator seat, and Jeff and his aide occupied the back of the van.  We ran a couple of errands, and then visited the Nursing Home where Jeff lived for 10 months.   The staff that was working was very happy to see Jeff, and pleased that he looked so good.  Jeff, on the other hand, was very nervous when we were there.  He seemed very uncomfortable, until my sister rubbed the back of his head.  We told him before we went in the door that we were just visiting and that he would be going back home with us, but he still expressed his concern.  As soon as we were back outside, he was fine.  We will continue to visit the staff that we grew to care much about from time to time, and hopefully Jeff will realize that he doesn't have to stay.  The van has MOOD lighting and Jeff seemed to really enjoy that as we drove.  We tried to put some of his music on the stereo, but I found myself turning the volume down.  I am sure that Jeff did not approve of that. 

We had a wonderful time, and when we arrived home, Jeff was definitely ready for bed. He was very verbal as I bathed him, probably telling me to hurry up, he was tired.  Hopefully tomorrow, we can take him on another excursion.  The van is a maroon Ford, high rise conversion van.  This plate will be JC12 PFL..  JC (his initials) 12 (his favorite number, and the date of his birth), PFL (one of his tattoos).  He told me it stood for Pals for Life, but many people have another interpretation of what it stands for.  Watch for us as we drive by.  I am sure that we will not be taking too many rides when we realize how much gas this vehicle will consume, but that never did really bother Jeff. 

Construction is supposed to start this week, but I haven't received the confirming call yet.  We, maybe I should say I, am so excited about the construction.  I love to decorate. 

Have a great weekend.  Thanks for all your support; your prayers, your donations, your physical help, and your interest in our son.  We appreciate everything that you have done for us.  Please continue to pray.  FAITH - LOVE - HOPE.  Bless you all. 

September 10, 2006 – Sorry that I didn't write last week, the time just escapes me.  I had several people contact me to see if something was wrong. The only thing that is wrong is I just don't have enough hours in the day to do all the things that I think I need to do. 

    Enough said on that, let's talk about Jeff.  Jeff's therapists are amazed at what he accomplishes with his Massage Therapist.  As a matter of fact, they are trying to help us to provide Jeff with Massage Therapy two to three times a week.  Right now, we are paying for this therapy, but we are trying to work this out with Medicaid.  Wish us luck. 

   We also have, parked in our yard, a VAN.  We came across a van for sale about three weeks ago, just three miles down the road.  We looked at it, asked the owner to bring it over so we could see if Jeff would fit in it, and agreed on a price.  The owner was extremely generous in agreeing on a price that we could afford.  This van is equipped with an automatic wheelchair lift and also is equipped so that the handicapped person can be the one who drives it.  We still need to have the wheelchair tie-downs and harness installed.  However, we did take Jeff for a ride in it without him being secured, thinking that he certainly would have done that before, so why not stick with his daring and dangerous life style.  Well, let me tell you, Jeff did not appreciate the wheelchair rolling around in the van.  Two of us were trying to hold it, and my husband was supposed to be driving SLOW, but it sure didn't seem that way in the back of the van.  As soon as we get the safety equipment installed we will be making some short trips to get Jeff used to traveling, so don't be surprised if we stop in for a visit. 

   Jeff continues to do well and amazes us by what he can do.  WE don't actually notice things, but when people come that haven't been to visit in a couple of weeks, they remind us of how much he has improved.  He is definitely becoming more vocal, but just as with a toddler when they first learn to speak, we need to have an interpreter for the most part.  He does clearly say, "yes, no, I don't know, Oh no, I love you, Mom, Sheila, and I know.  He continues to smack his lips to thank you, or he spits if he disapproves.  He certainly gets his point across. 

   Visitors are welcome anytime, someone is always here, but be sure to use the front porch, the dogs are very protective.  If you visit and a therapist is here, you are welcome to watch and be amazed at what they accomplish. 

   Today, we took Jeff into the family room so that he could spend the afternoon with the family.  Our two grandsons (2 and 3) were visiting and kept us all entertained.  Jeff seemed to enjoy watching and listening to them.  They are still a bit frightened by Jeff's condition, but they are getting better. 

    Construction is supposed to be starting soon, hopefully within the next couple of weeks.  I am using this as a excuse not to clean.  I am sure that the construction is going to create added dust, so why not wait and clean it up all at once?  Works for me.

    Have a great week, please continue to pray for Jeff's recovery, and bless you all.  FAITH – HOPE – LOVE.

August 28, 2006 – I don't have much to report this week.  Jeff continues to get stronger.  His left leg is gaining more mobility, due to the constant ROM (range of motion) provided by the wonderful aides.  He enjoys his visitors and especially enjoys his two nephews.  He grins whenever they are beside his bed.  They are still a bit frightened by their Uncle Jeff, but they are getting braver.  They will touch his arms and legs now, and Jeff just beams when they do. 

He has new braces for his hands, which he is tolerating very well.  Tonight is the first night that he is going to wear them all night, let’s hope it goes okay or tomorrow will be a very long day.  The dogs like to lie right beside his bed and guard him.  These are the same dogs that he claimed he was allergic to before he collapsed. 

We have decided to sell Jeff's Evo – not that he will agree, but it will not be good for it to sit around.  If you know anyone who is interested in this beautiful car, please let us know or have them contact us.  We have had it out the past few days and it is running fine.  I can't say the same for my neck after riding in it with my husband.  I now know where Jeff gets the 0 to 100 in five seconds from.  We certainly cannot keep it, we can't even operate the stereo, let alone all the gauges and gadgets on the dashboard.  I think you need some kind of degree to drive it.

Have a great weekend, it's our first three-day weekend and holiday at home in fifteen months.  We are so excited about this.  Hopefully the construction will be done so that we can have a table for Thanksgiving dinner.  If not, we will have to gather around Jeff's bed with our plates.  Thank you all for your continued prayers, you are our strength.  FAITH - HOPE - LOVE.  Bless you all.

August 22, 2006 – Jeff continues to do well.  His aides are working diligently with his range of motion, which is helping his movement.  Tomorrow he will be fitted for arm splits that will, in time, straighten out his arms.  When this is done, therapy will be able to work with him more.  He is unable to go to Happiness House at this time for therapy.  He needs to gain a bit more control for this to happen, so instead we are going to try to bring the equipment to him.  We are hoping to start with a tilt table which will stand Jeff up.  He was using one of these while he was at St. Mary's.  His custom-made wheel chair has arrived and is wonderful.  It is blue of course, and has a gel seat which is very comfortable, I might add.  He enjoys going for walks and sitting outside on the weekends.  Jeff's ten-year class reunion is this coming weekend.  Unfortunately, we do not have transportation to take Jeff, but I know that his classmates will be thinking of him.  Have a great time guys.  Jeff, I am sure, wishes he could join you, maybe for the next reunion.  If you have time while you are in town, stop in to see him. 

Last but not least, a construction update … construction will be starting September 15th.  Now I’ll have an excuse for the buildup of dust.  Please continue to pray for Jeff as we pray for YOU each and every night.  Bless you all.   FAITH  -  LOVE  -  HOPE.

August 13, 2006 – Jeff continues to do well.  He has grown very fond of his primary aide and of all those taking care of him.  We were all ready for a rough transition, but everything continues to be fine.  We have started using splints on his wrists and hands, fingers included.  He was tolerating the splints extremely well, but his fingers did not feel the same. This morning when we woke up, Jeff's fingers on his right hand were extremely swollen.  As the day went on, his left hand decided to follow suit.   We know that this is from the splints, so we were not able to use them today. 

His aide took him for a long walk, sat out by the pool for hours with him, and then when he was back in bed gave him a massage with his new massager.  Now, for those of you who really know Jeff, that doesn't sound like too much out of the ordinary for him, except maybe the walk – he would have gone around the block on his motorcycle. 

He is being fed water from a spoon and does very well with swallowing it. He continues to communicate with body language.  His facial expressions are hilarious at times.  He seems to be more limber with his legs, thanks to his primary aide; she works him constantly when he is awake. We couldn't be more pleased with her and I think that Jeff would agree.  It is so nice to know that someone is helping him when we cannot be there. 

Have a great week.  Please continue to pray for Jeff, he still has a long way to go, but he is making progress.  Faith, Love, Hope.  Bless you all.

August 6, 2006 – Jeff is doing great at home.  He continues to be evaluated by the therapist, but is very fond of his primary aide.  She is terrific with him and we completely trust her with his care.  It seems as though she has been working with him for years.  She sits by his side hour after hour, she completes range of motion on his arms and legs daily, she has taken him outside for walks, and she has taken him out by the pool.  He is so calm and content when she is with him, and remains calm when she goes home for the night. 

The speech therapist gave us the okay to start giving Jeff some fluids orally.  So far he has had water by swab, vanilla pudding, turkey soup broth, and today we gave him steak.  We took a good size piece of steak, told him to open his mouth, and put it in his mouth and let him bite down on it.  He closed his eyes, and just held his mouth closed for a long time.  I think that he was savoring the moment. 

    Taking advantage of all the MAN power we had at the house this evening, we sat Jeff on the edge of his bed; he seemed to enjoy that also.  We also attempted to stand him up, but he seemed to be unsure of it so that did not last too long.  I have set a new goal for Jeff: we are going to work on sitting on the edge of the bed, standing, and pivoting to get into his wheelchair.  We are going to accomplish this, hopefully, by Christmas.  It is important to set goals, and hopefully this one is not unreachable. 

Today, we had our first family dinner since Jeff has been home.  Dinner was not ready on time, but was delicious when we finally served it.  I believe that Jeff enjoyed the smell of the food, the noise of the grandchildren, and the laughter of the family.  We have much to be thankful for, we are finally a family again.  We still have Jeff, and we have been blessed with a wonderful, caring person to help us take care of him.

Have a great week, we certainly will.  FAITH, LOVE, HOPE.  Bless you all.

July 30, 2006 –Jeff has been home for only 3½ days and what a difference it makes.  He is much more content, and cooperative.  He has been sleeping all night with the exception of last night.  A minor adjustment was made and back to sleep again.  As a matter of fact, I was able to sleep until 9:30 this morning! I sure needed that.  It just seems so good to be home.  Jeff has had absolutely no trouble with the move.  He has adjusted very well to his aides, and there are certainly a number of them.  His therapy will begin next week, then I expect that he will be sleeping by the time I get home from work.  I wanted to take him outside today, but it was just too warm.  One of these days we'll get outside so he can smell the nice country air.  My grandsons are very glad to have him home also.  They still don't seem to understand, but they are more comfortable around him with him here.  Bringing him home was the best thing that has happened to us in a year.  Thank you all for all your help, your prayers, your donations, and your love and support.  We could not have made it through all of this without you.  FAITH, LOVE, HOPE.  Bless you all.

July 26, 2006 – JEFF IS HOME!!!  We finally did it … Jeff is finally home.  What a great feeling to have him home after 13½ months.  He handled the move wonderfully.  He was a bit shy (if you can imagine that) when the staff from Flower City arrived to meet him, but he soon warmed up to them. 

We would like to thank you for your prayers.  We are now a family again – not the same family, but we are a family again.  The next few days will be busy with meetings to determine what therapy Jeff will need and how often he will need it.  As soon as I have a schedule I will let you know, so you can plan your visits if you wish.  Just remember to always use the front door  (it is much safer that way – PROTECTIVE DOGS).  

Please continue to bless us with your prayers, you are doing such a great job.  FAITH - LOVE - HOPE.  Bless you all. 

July 25, 2006 – Well, after 13½ months, Jeff is finally coming home.  Tomorrow is the day.  The equipment has been delivered, or will be today.  The ramp should be delivered today, and Jeffrey will be home tomorrow.  The room in is order (the dining room), his bed is made and are we ready for this?  I don't think so.  We have been praying for this day for 13 months, and now we are so very nervous and frightened.  Are we doing the right thing, is this best for Jeff?  Only time will tell.  Because of the generosity of some wonderful person that we don't even know, we have been offered the use of a handicap vehicle to bring Jeff home.  His first vehicle ride since June 11, 2005 that has not been an emergency vehicle.  It is going to be hard to leave Living Center South, Jeff's home since September 25, 2005.  We have become very attached to the staff there and they are very attached to Jeff. 

    I will try to write later in the week to let you know how everything is going.  Please, remember us in your prayers, we certainly need them to get us through this new phase of our lives.  FAITH - LOVE - HOPE.  Bless you all.

July 16, 2006 – We have just ten more days until Jeff comes home.  The construction probably will not start until September, but we will make do for now.  I have some wonderful news to share with you. 

    Last evening my sister was visiting us at LCS and I, with the help of an aide, was changing Jeff.  He has developed this very bad habit of spitting at the aides and nurses, if he dislikes something.  When we were done, he spit at the aide and I proceeded to tell my sister that there is one aide that he spits at the entire time she is working with him.  He glares at her and spits.  He smacked his lips so I went to his bedside to give him a kiss, when he raised his head like he was going to kiss me.  He got his face real close to mine and be SMILED, such a big smile.  He looks so funny with his two front teeth missing.  My sister and I both became hysterical and laughed uncontrollably and then Jeff said "Ha, Ha, Ha."  Well, we laughed even harder and he smiled the huge smile again.  We laughed so hard, tears rolled down our faces.  It was so wonderful, I ran to tell the staff, which one of them had heard him when he walked by the room.  It was Jeff's normal voice and his normal sarcastic tone (don't know where he got that from).  Well, he must have tired himself out, because today, he did nothing but sleep.  I took him outside for a walk this morning and he wouldn't even hold his head up.  When we walked by the Geneva High School football field, I told him to look at the seagulls on the field.  He raised his head, and turned towards the field to look at them.  When we had walked past them, he hung his head and went back to sleep.

Bruce and I are being trained on how to mix his food, administer medicine, and water flushes.  We are doing quite well.  I have changed him several times, but Bruce refuses.  He says that he didn't do it when he was little and he is not going to do it now.  Let’s hope the need never arises.

We have our final discharge meeting on Wednesday at LCS.  We have another meeting at home on Friday.  Time is going by quickly, and I am not totally ready for him to come home, but just like Christmas, it will all work out. 

Faith, Love, Hope.  Bless you all.

July 11, 2006 – Only 15 more days and Jeff will be home.  Will we be ready, I certainly hope so.  I started my training on meds and tube feed tonight.  Even after watching them do this for 13 months, it is so different when you have to do it yourself.  We will continue to be trained until Jeff comes home.  Nurses will be scheduled to do this for us, but we will also need to know how. 

Jeff continues to progress.  I took him for a walk on Saturday and much to my surprise he was looking to the left and then to the right.  In the past, he had always looked straight ahead.  He does, however, get nervous when I tend to allow the wheelchair to go off the side of the sidewalk, which I tend to do when I don't pay attention to where I am going. 

His tube feed is being changed every couple of days, more water in the food and flowing at a higher rate.  This will eliminate the every two hour flushes, to make it easier when he gets home.  He is tolerating this very well, the first couple of days were bad, but he adjusted.  His meds have been changed to every six hours and that is working well also. 

I believe that he is using his body to let us know when things are not right.  If something is bothering him, such as the feed pump beeping, he spits.  If he doesn't care for one of the staff, he spits.  If he is chilly, he will drool.  These signs all sound disgusting, but it is his only way to communicate to us that something is wrong.  It takes us a while before we understand, but he definitely gets his point across. 

We looked at another van last week. Jeff was able to sit in this one, and he certainly enjoyed it.  This company is a bit less expensive than the other one, and we liked the features of the ramp much better.  Once Jeff is home, we will be able to concentrate more on the vehicle. 

Please pray for us as we take this huge step of bringing Jeff home.  It is something that we have worked so very hard for and now that the time has come, we are so very nervous about it.  We can do this and Jeff can do this, but your prayers would be greatly appreciated.  FAITH -- LOVE -- HOPE.  BLESS YOU ALL.

July 2, 2006 – Jeff continues to get stronger every day.  He is making great strides in his range of motion and his awareness.  He has received a new wheelchair (on loan) that he can use until his is ready.  He really likes the new chair.  The new chair conforms to his body, so he doesn't feel like he is going to fall. 

Today we went outside for a short time.  He really enjoyed that, but we had to go back to his room for his tube feed to be turned on.  He is no longer on continuous feed.  He does not get fed from 6:00 am to 12:00 noon.  Slowly we are changing his schedule to prepare him for coming home.  July 26th is the scheduled date – please pray that everything goes well.  Securing a physician to treat him upon his discharge has been a challenge, but hopefully that will work out.  Jeff has learned to show his disapproval by spitting.  Nothing really comes out, but air, but he gets his point across.  I have made a very large calendar to hang on his wall so we can have the official countdown, 22 more days today.  We have so much to do to prepare the house for him, but I will probably not do any of that until the last minute.  I work best under pressure.  Still waiting for the construction to begin, but that doesn't seem so important anymore, as he is coming home without it.  It will come in time. 

This week we have an appointment with another van company, they will bring a van to LCS for us the look at, this way, we can put Jeff in the van, and see how it fits him.  They have three in stock and their prices were quite a bit less than the other place. 

FAITH, LOVE, HOPE.  Bless you all.

June 24, 2006 – I am pleased to announce that because Jeff has gained so much weight, he now needs to lose 15 to 20 pounds.  He looks great, but still needs to shed the pounds.  He is not receiving tube feed from 6:00 AM to 12:00 Noon.  This is a great step in the right direction, because when he gets home, he will be able to attend Happiness House in Canandaigua for therapy and eventually for day treatment.  I am sure that he will enjoy being on the road again.  On the down side, Jeff seems to have a spot of poison ivy on his left arm.  We are not sure how he got this, but it only goes to show Jeff can still be a bit mischievous.   

He continues to be very vocal, some days more than others.  He is doing very well with his arm exercises.  He can raise his elbows above his head, with assistance, but the range of motion is great.  Today, I was on my way to my niece's graduation and I was talking to Jeff on the telephone – still his favorite pastime.  I asked him if he wanted me to tell Christina congratulations, and he replied no.  I explained to him that I thought that she would appreciate being told congratulations and he replied I know.  I again asked him if he would like me to tell her congratulations, he again replied no.  I asked if he thought that was very nice, and he replied yes.  Bruce was with Jeff at the time of the conversation and he said that he was moving his head all over and really moving his eyes.  It was unbelievable that I was able to have a conversation with Jeff on the telephone, the first time in over a year.

Our plans to bring him home are still in place.  We are really close to securing a PCP. We were not able to find anyone local to accept him as a patient, but have been in communication with a doctor in Victor.  Hopefully this will work out.  Monday, we have a meeting with the people who will custom-make a wheelchair for Jeff.  Do you think that they will let him have a custom paint job on it? 

FAITH – LOVE – HOPE. Bless you all.

June 14, 2006 – Today we had our first discharge meeting.  Representatives from Living Center South, Flower City Health Care, and the Carpenter Family (including Jeff) attended the meeting.  It was decided that it will be alright to bring Jeff home before the construction is completed (or maybe even started in this case) and he will reside in our dining room (I won't be serving dinner for a bit longer).  We have another meeting on July 19th, and if everything is in place Jeff will be discharged on July 26th.  Some minor details need to be worked out, but I am sure that it will all come together.  Unfortunately, we have had to put the purchase of a van on hold for the time being.  We will need to use our funds to modify our home for Jeff.  We do have donations that have been received for the purchase of a van set aside.  The plan is only temporarily on hold, but hopefully not for long. 

Please continue to pray for us.  The next six weeks are going to seem so very long, but we have a lot to do to prepare for Jeff so I am sure they will slide by quickly.  Thank you for your continued FAITH, LOVE, and HOPE.  Jeff continues to improve and gain strength and will continue to improve with all your support.  He has made it far beyond what they expected. Thanks again. Bless you all.

June 11, 2006 – Well, it’s been a year.  As we reflect back on the past year Jeff took one huge step backwards, but has made some forward progress.  He is doing great this week.  He is raising his arms and is very vocal.  He is really using his tongue and his lips to try to talk; hopefully it won't be long before he is able to put it all together. 

We have decided we are not going to wait for the construction any longer.  Jeff is coming home as soon as we are able to obtain the necessary equipment.  We are going to convert our dining room into a bedroom for Jeff until the construction is completed.  I don't know why we didn't think of this sooner.  We are tired of not being home, and we want Jeff home, it has been long enough for him to be away.  I don't really know if he had ever been away from home for a straight 12 month period before. 

Have a great week, and hopefully next week I will be able to give you a date as to when Jeff will be home.  We have our first discharge meeting on Wednesday.  FAITH – LOVE – HOPE.  Bless you all.

June 4, 2006 – I usually write on Sunday night so that I can give you a report for the whole weekend, but something terrific happened yesterday, and I just can't wait to share it with you.  Bruce (my husband) went in to spend time with Jeff yesterday morning and when he walked into the room he said "Hi Jeff" just as we always do.  Jeff responded with "Hi Dad, I Love You."  Bruce was so very happy – this was the first time Jeff has even said Dad.  He says Mom all the time, but not Dad.  It really makes us believe that he knows what is going on but just is having trouble with his body functions. 

We continue to do mom and dad therapy – dad his legs, and mom his arms.  He is really doing well with that.  He continues to have his weekly massages, which he is doing well with, and his therapist is very pleased with his response.  He was sitting in his wheelchair this week and he kept lifting his right leg up and down.  He is no longer holding his mouth wide open – it is closed unless he is trying to talk, and he is placing his tongue to the roof of his mouth when he is trying to say words.  Many times, he talks but we are not able to understand … maybe next week. 

   As far as the construction, we still do not have a date to start.  It seems that we keep running into road blocks, but we will get there.  It is probably just as well as we wouldn't be able to do much with all this rain.  I keep telling Jeff that we must be patient.  That’s not easy for either of us as we are not patient people, but we pray for God's help with this every night.  Jeff also repeats AMEN, when we are done with our nightly prayer. 

Next Sunday is the one-year anniversary of Jeff's collapse.  We are so very lucky that we still have him.  It is my firm belief that if he wasn't going to be okay and have some quality of life, we would have lost him sometime in the past year.  It may take a few years for him to get his life back, but what a small price to pay to be alive. 

   Please continue to pray for Jeff and his recovery. So far you are doing great; because of your prayers, he is still with us.  Pray for us to get through the next week – it is going to be very hard for us as we think about what happened to our beloved son over the past year.  Pray for the wonderful men and women who saved his life on June 11, 2005 and have helped him to remain healthy and alive since that horrible evening.  We pray for the above every day and we always pray for you.  FAITH - LOVE - HOPE.  BLESS YOU ALL

May 29, 2006 – We finally received approval from the State last Monday to start modifications to our home.  We are finally there.  It has been a long haul, but Jeff is worth it.  He is doing well.  My sister and I took him for a walk today.  It was so very hot and the sun was beating down on him, but he just sat back in the wheelchair with a sort of smirk on his face soaking up the rays.  It probably felt real good to him.  We stayed in the sun for only about 30 minutes, because I didn't put sunscreen on him (he would have protested, I am sure) and I didn't want him to burn. 

His toes are healing well, and he had his tooth filled this week.  He is looking pretty good.  He does need his hair cut, and we are going to try to wax his eyebrows - he is getting a unibrow and I know he would not like that.  

Let's hope and pray that the next time I write, I can tell you when we are going to start construction.  It seems like it is taking forever, and I just can't wait to get him home.  Please, as you pray for us, remember to pray for our service men and women who have lost their lives fighting for our freedom, and for those who continue to fight for us.  FAITH, LOVE, HOPE ... Bless you all.  Try to keep cool the next few days. 

May 21, 2006 – Another week has passed us by and we still do not have a decision from the State, but we have received word that they are reviewing Jeff's case and will be making a decision soon. 

Jeff had another X-ray on Thursday … his pneumotosis has showed slight improvement.  His gag reflex is really starting to develop and he is starting to work his tongue and his jaw.  His food rate has been decreased to 40 cc per hour and his water flushes have been changed to find an amount that his stomach can tolerate.  They are uncertain what the rate of increase will be, but it will be increased slowly so he can tolerate it and be comfortable.

He will be visiting the dentist this week to have his cavity filled. That will be a stressful day for both of us. We have been working with his arms and it appears that he has control of his shoulder to elbow area. He can move them up and down and in and out when asked to, but not so with the elbow to wrist area.  One step at a time I keep telling myself.  He continues to receive his weekly massages, and I feel that he is benefiting from them.  He is much more relaxed and seems to have more mobility. 

Have a great week. Please pray not only for Jeff's recovery, but for a positive decision from the state.  FAITH – LOVE – HOPE.  Bless you all.

May 14, 2006 – Unfortunately I do not have great news to report this week.  Jeff started the week with his usual stomach issues.  He was very bloated and expelling an extreme amount of gas.  The staff has been aware of this situation for several weeks, but nothing had been done about it until I really insisted that some tests be run.  Jeff was not able to be in a sitting position at all and after several laxatives, was not able to have a bowel movement.  An X-ray was done and when they noticed a problem, a CT was completed.  Jeff has been diagnosed with pneumotosis (air in the wall of the colon).  When I requested the tests be done, I also asked to have Jeff examined by a GI specialist.  Well, due to the results of the test, we were visited by the GI specialist on Friday night.  He explained to us that this condition is not something that we should be concerned about as we caught it very early.  He said that if the symptoms had been ignored, it could have been deadly for Jeff.  Many times this condition is cancerous, but he does not feel it is in this case.  They took Jeff off from all food for four days, and started to feed him again today.  He is on different food and at a different rate.  I have also requested a meeting in the near future with the dietician to discuss Jeff's food.  The GI Specialist will continue to monitor Jeff.  

Jeff was a bit tense Saturday night, making the staff a bit uncomfortable, but today he seemed to be much better.  As far as progress for the week, I have been so involved with his being uncomfortable that I didn't even watch for progress.  Jeff celebrated his 28th birthday with many members of his family joining him for lunch, and with a massage.  Next year maybe we’ll be able to go out to dinner for his birthday. 

The process of bringing Jeff home seems to have come to a standstill.  Hopefully we will hear something from the State this week.  I made a couple of telephone calls last week to try to move things along. 

As always, thank you so much for your thoughts and prayers.  Please continue to pray. We still have a long, bumpy road to travel.  But with your FAITH, LOVE, and HOPE, we’ll get there.  BLESS YOU ALL... 

May 7, 2006 – Jeff is doing great with the exception of some stomach gas.  Hopefully they will figure out what is causing this.  They are making plans to change his g-tube (feeding tube), but I don't have a date that it is scheduled yet.  Last Thursday he had both of his big toes fixed so his ingrown toe-nails will no longer cause him pain and infection.  He did very well through the procedure, but later in the day was a bit uncomfortable.  He continues to maintain his weight and somehow still looks tan.  Visitors have asked me if he is tanning.  Well, as far as I know he is not, but we all know Jeff and how he likes to be tan, so if there is a will, there is a way. 

Jeff's birthday is Friday – he will be 28.  I don't know how he feels about that, but I know he did not want to be 27.  Maybe next year we can have a very big Birthday Bash for him and he will be able to blow out the candles.  This year, we will just have to settle for a peaceful family night at Living Center South. 

We are still waiting for a decision from the State, before we can proceed with construction.  We should hear any day, I hope. 

As always, we thank you for your visits, prayers, cards, and donations.  Bless you all – we couldn't do this without your support.  FAITH – LOVE – HOPE.

April 30, 2006 – I really don't have too much to report this week.  Jeff remains strong and healthy.  He actually said "Hi Mom, Hi Mom” to me on Friday.  I could tell he was trying very hard to say something, so I just listened intently and told him to remain calm and take his time.  He struggled for a bit with his thoughts and then blurted it out.  Moments like that make the past eleven months worth it.  Just to hear his voice. 

He received his massage this past week. It makes him so very peaceful and he usually sleeps for several hours afterward.  This week the Podiatrist is going to take care of the ingrown nail of his big toe on his right foot.  It has been very swollen and painful for a few weeks.  He will also get his cavity filled within the next few weeks.  The G-tube (gastrostomy, or feeding, tube) has been causing the staff some problems, but hopefully we can get that taken care of before he comes home. 

We have been busy trying to move furniture around in the house to prepare for the construction.  At this point in time, we are waiting for approval from the Department of Health.  No news is good news, right? 

Have a great week, thanks for all your prayers. We couldn't do this without all of you.  FAITH – LOVE – HOPE.  BLESS YOU ALL.

April 23, 2006 – Another week has quickly passed by, and we are closer to getting Jeff home.  He has had a very good week.  He seems to be very alert and moving his eyes and mouth a great deal.  He has managed to bite his left cheek very badly and has bitten his tongue on both sides, and is on an antibiotic due to a possible infection in his mouth from when he bit his cheek.  He needs to remember that he cannot just close his teeth without paying attention to where his tongue might be.  He will learn, as I believe that it is very painful when he bites himself. 

We continue the “mom and dad therapy” and he continues to receive weekly massages.  We have seen a great change in his disposition since he has been receiving the massages.  He does not seem to be tense at all, unless something is wrong.  He also seems to be sleeping more.  He takes naps during the day and goes to sleep in the evening around 8:00 to 8:30, depending on what time he gets his shower or bed bath. 

Have a great week.  Thanks for all your prayers, and remember FAITH, LOVE, HOPE.  Bless you all.

April 17, 2006 – This past week was a very busy week.  We received the floor plans for approval and are just waiting for the Department of Health to approve the “emods” (one of the new terms that we have had to learn).  Jeff has been running a low temp, but doesn't seem to show any signs of an infection.  The majority of the residents and staff a LCS had a flu bug, so that is probably what Jeff has been trying to fight off.  He has been very calm, and relaxed, and trying very hard to vocalize with us.  He knows what he is saying, but we are having trouble with it.  He received another massage last Thursday, then slept for the next four hours, only to wake up when I was leaving for the night.  Saturday morning Jeff and I sat outside on the patio at LCS for two hours.  He again slept for several hours that afternoon when placed back into his bed.  The past two nights he has fallen asleep around 7:30 p.m. which has allowed me to leave a couple of hours early and go home and try to get some very needy tasks done. 

Easter was well-enjoyed by our family that joined us at LCS for dinner.  Grandma and Grandpa Carpenter treated us to a catered dinner that was delicious.  We had supplied our own desserts, which were also delicious, and all went home feeling like a stuffed turkey.  The children, young and old, enjoyed an outside Easter Egg Hunt complete with prizes for all the young ones (arranged by Aunt Sandy Verdehem).  Activity time (Play Dough) was also enjoyed by all of the children and a few of the adults.  Jeff enjoyed being in the dining room with us even though it was extremely warm; he seemed to tolerate it well.  He remained fairly calm even with the loud voices of the anxious children.  When he was placed in bed, he settled right in and took a bit of a nap.  He has become very comfortable at LCS, and I am sure moving home is going to be a big adjustment for him.

If all goes well, we will be starting construction soon.  I will let you know as soon as ground breaks.  We have decided, due to costs, that we are going to complete the construction in two phases:  Phase One, now, to build on a 10 × 20 addition and finish the bedroom inside; and Phase Two, in about a year, to complete the handicap bathroom and the ramp.  This will at least allow us to get him home.  The rest of the house will be completed as we can. 

Please enjoy your family, friends, and loved ones, each and every day.  You never know what tomorrow is going to bring.  Make sure to tell them what they mean to you and to express your love.  It is important that you let them know how you feel.  Spring is finally here, a time for new beginnings.  We will soon start our new beginning with Jeff home and our family together again.  It has been a long ten months.

FAITH  -  LOVE  -  HOPE

Bless you all.

April 9, 2006 – I don't have too much to report this week.  Jeff is receiving massage therapy and totally enjoys it. The therapist has shown us how to do a few things, so we are making progress with that.  He remains healthy, and gains strength every week.  He looks great, and appears more responsive as time goes by. 

I took him outside this afternoon, but I need to locate his sun glasses as the sun seemed to be too bright for him.  We stayed out for about 30 minutes, and he slept most of the time.  Jeff and I are having a bit of a problem with television show selections.  He seems to like MTV and his father has grown to like it also.  I, on the other hand, like to watch others shows now and then.  Jeff seems to be very vocal when I am trying to watch my shows, but when I turn to MTV he quiets down.  Now, doesn't that sound just like Jeff? 

Easter is approaching, and we will again be fortunate enough to enjoy our Easter dinner with our family at Living Center South.  Hopefully this will be our last holiday meal in their dining room.  FAITH  -  LOVE  -  HOPE, and Bless you all.  Happy Easter!!

April 2, 2006 – Things are looking good.  Spring is a time for new beginnings, and we hope and pray that this will be true with Jeff's recovery.  Jeff is doing very well; he is extremely calm and getting stronger every day.  This week he managed to get his head placed right in the top opening of the side rail on the bed.  He did not have any red marks or any bruises or scrapes, so he was very careful when he did this.  I see this as a sign that he is getting stronger and knows exactly what he is doing.  (He used to do things like this a lot when he was younger.)  He is also trying to sit up.  We work on a sitting exercise every day, and this must be strengthening his stomach muscles. 

He is now getting a massage every Thursday, late morning, so please try not to visit during this time as you won’t be able to see him for about an hour.  After his massage, he is extremely relaxed and calm and able to better straighten many parts of his body that have been contracted. 

We continue to work on the arrangements to bring him home.  Hopefully soon, it will all fall into place.  Everything has to be done in a certain order.  Many people have been dreaming of Jeff, they all dream of him walking.  Let's hope and pray that dreams CAN come true.  This would be so very wonderful.  Have a great week and remember ... FAITH - LOVE - HOPE.  Please keep us in your prayers.

March 26, 2006 – Jeff has done very well this week.  He is enjoying a new exercise that I have been working with him on.  I am using his arms to pull him into a sitting position.  This stretches his contracted arms, and works his stomach muscles.  He stretches when we first get into position, and then enjoys looking around the room.  The first few nights that we did this exercise, he slept very well. 

I am trying to teach him a sense of balance.  If he starts to lean to the side, I will tap on the opposite arm with my pinky and tell him he needs to pull with that arm to straighten himself up.  Surprisingly he is doing this with his right arm.  He tends to lean to the left most of the time. 

When he is lying down, he will continually lift his head and lower it to indicate to you that he wants to sit up.  We have been asking the staff to place him in his wheelchair, instead of the Geri-chair to allow him to be in a more upright position, and to allow his feet to be on something rather than just dangling.  This is also working out very well.  He continues to get stronger and his gaining a few pounds each week.  He really is looking good. 

We have told him that he is going home, so now when some people say goodbye, he gets very upset.  If you ask him if he wants to go home, he says “uh huh”. 

This past weekend, he had an overwhelming number of visitors. He accepted this very well and continues to exercise while they are in the room.  If you haven't seen him in a while, stop in – you will be amazed at what you see. 

Please continue to pray for Jeff's recovery – the prayers are what is going to make our miracle happen.  Spring is here, the season for new beginnings.  FAITH – LOVE – HOPE.  Bless you all. 

March 19, 2006 – Jeff remains healthy and seemed to be very content this past week.  I have been trying a new exercise with him, which he seems to enjoy and it seems to exhaust him to the point that he has been sleeping very comfortably all night.  Progress is being made on our plans for taking Jeff home.  We are still trying to figure out what type of van would be best to purchase.  We are open for any suggestions that any of you may have.  This is a very expensive purchase and we want to make sure that we get the right vehicle to serve all of Jeff's needs.  We are still searching for therapists for OT, PT, and Speech, so please let us know if you have any ideas on that.  Please continue to pray and believe.  FAITH, LOVE, HOPE.  Bless you all.

March 12, 2006 – This week we have had our ups and downs.  Jeff was not feeling well last weekend and was running a slight temp.  All tests came back negative, with the exception of an infection in his lungs, but not pneumonia.  He appeared to be fine most of the week.  Several of the staff members have seen him do devilish things and then smirk.  Now doesn't that sound just like Jeff?  When I arrived at LCS before going to work on Friday morning, Jeff was getting quite a bit of attention.  His temp had gone from 99.9 at 6:00 AM to 104.8 at 7:00 AM.  Again, they ran all the tests and again they found nothing wrong.  By 9:00 AM, his temp had dropped to 102, and then eventually down to 101.  He seems to be in good spirits and doesn't act like he doesn't feel well.  Some of his friends were out on their motorcycles on Saturday and stopped in to say hi.  One of his friends has been out of the state for a few weeks and stopped in before going away again for several months.  Jeff became very upset when he said good-bye.  He really does understand what is going on. 

The construction on the house should start in a couple of months, and we are in the process of purchasing a van.  When we obtain the van, Jeff will be able to come home for a few hours on the weekends.  That will be so great. 

FAITH – LOVE – HOPE.  Bless you all.  You are the force behind our strength.  We appreciate everything that you have and are doing for us and for Jeff.  Thank you so much.

March 5, 2006 – Yesterday I arrived at LCS to find the staff placing Jeff on a stretcher.  He was hooked up to oxygen and not looking like he felt well at all.  He had been running a temp for a couple of days, and he was on his way to GGH for a chest x-ray and blood work.  He was very calm, but you could tell he was not feeling well.  In addition to the x-ray and blood work, they took a urine culture, flu swab, and tried to get a sputum culture.  So far everything has come back negative, however, they feel that he aspirated and some of it went into his lungs.  They have placed him on Levaquin and will continue to monitor him.  He remained calm throughout the day, sleeping quite a bit.  He has been doing well the past week, but has been having trouble with his water flushes.  He continues to get stronger every day. 

The contractor that will be doing the construction to our home to prepare for Jeff will be visiting us this week.  We also have been searching for a vehicle that will allow us to transport Jeff when he comes home.  His transportation to and from therapy and Doctor visits can be provided, but if we want to take him somewhere for pleasure, it will be an issue.  We all know that Jeff hasn't been to the mall in a long time and I am sure he is going to want to go as soon as he is able.  We are still struggling with the therapy issue, but had a meeting with LCS and they provided us with a few ideas.  When Jeff gets home, he will go to Happiness House (hopefully) in Canandaigua a few times a week.  This week I was asked what we expected out of Jeff.  I was not able to answer that question.  I guess we have never thought about it or even talked about it.  We just want Jeff to do the best that he can do whatever his condition is.  He is our son, and we love him for whatever he can or cannot achieve.  We have had our good times, and for sure our bad times, with hopefully many more good times to come. 

We have a lot of work to do to prepare for Jeff to come home.  It will be so very good to have him home.  I just can't say that enough.  We are a bit nervous about this move, but we will be fine.  As soon as we obtain a vehicle, Jeff can come home for short periods on the weekend.  This will be a adjustment for all of us. 

As always, FAITH LOVE, HOPE.  Bless you all and thanks for your support.  You all mean so very much to us.  Words cannot express our gratitude.  Please continue to pray that we will all have strength to continue our quest for Jeff's recovery. 

February 26, 2006 – GREAT NEWS TO REPORT – Jeff is going to be coming home! The move will probably take place in early summer – at least that is our goal.  We have much work to do – home modifications, possibly purchasing a van to transport him, equipment to order, and emotions to deal with.  We are so excited about this, but very nervous at the same time.  Is it the right thing to do?  If only Jeff could express his opinion. 

Jeff continues to improve, but remember, the steps are small and slow.  This week he has started to say no.  I asked him if he wanted me to brush his teeth, something that he truly enjoys, and he usually will respond yeah or uh huh, but this time he said no.  I was amazed.  I asked him a second time and got the same response.  It was great that the aides were in the room at the time so they also heard this.  He has also started to move his arms in different ways.  He is now pulling them to the side away from his body.  I have seen this twice this week.  He continues to move his right hand to his mouth, and is able to lift and lower his left leg upon command.  He has started to jerk his head away from us when we are doing something with him that he does not approve of. 

We are trying to go through a Canandaigua facility regarding the self-pay therapy.  We found out this week that it was not possible for LCS to provide him with self-pay therapy.  It is so very important that he gets regular therapy, but we have been struggling to find someone to provide speech, OT and PT.  They need to have a license and be CPR certified.  Then they need to be approved by LCS.  If you know anyone who can help us out, please let us know ASAP. 

Jeff was visited this week by the podiatrist, who worked on both of his big toes.  They look much better now, and don't seem to be so very sore.  He is having a bit of trouble with his stomach this week, but the nurses are right on top of this and should have a solution within the next few days.  We have another meeting this week to set up a plan of attack for the next few months.  I sure hope that we have the strength to get through this. 

As always, FAITH, LOVE, HOPE.  Bless you all.  Thank you for your prayers. Without your prayers, your support, and GOD, we would not be able to get through this.  Have a great week.

February 19, 2006 - Jeff has continued to progress this week.  He remains healthy, with only a problem with both his big toes: he seems to have ingrown toe nails that have become infected, but this is only a minor concern.  He has been working very hard with his toothbrush and becomes very upset when you take it away from him.  He has been successful in raising his right hand and the toothbrush to his mouth time after time.  He even has been able to go to his eyes with the brush.  He has not mastered the task of closing his mouth once he gets the brush there, but there is always next week.  We have two meetings on the 21^st: one to discuss self-pay therapy with Living Center South and the other to determine if Jeff is medically able to be taken care of at home.  However, Friday we were reminded that we definitely need to have back up power in place before he comes home.  I don't think he can handle the house being 50 degrees.  I also could not handle it, as I bailed and had a sleep-over with Jeff Friday night.  It was nice to see how he is during the night.  I found that he remained calm and went right back to sleep after being turned every few hours.  I do believe that he knew I was in the room.  I tried to remain invisible just to see what he would do, but he often called my name out during the night.  He went to sleep at 9:00 PM and woke up at 11:00 AM, only because he was going to get a shower.  Jeff continues to communicate in his own way.  He will respond with “yes” or “uh-huh” and shakes his head no when asked questions.  However, just like Jeff, if he does not want to respond, he doesn't.  He also responds “I don't wanna” to some of the staff when they are getting him dressed and undressed.

Bruce started a new job last Monday and had to train during the day shift for the week, and so it was necessary for us to find Jeff-watchers to stay with Jeff.  We are very fortunate to have such support and it was very easy to find people to volunteer.  I felt that this would upset Jeff, as we were changing his daily routine, but he adjusted very well. 

Please help us to pray that the determination will be that Jeff can come home.  The rest is in our hands and will happen one way or another, but we cannot make this determination.  Jeff will be so much happier at home as we all will be.  He is part of our family and that is where he should be.  I will let you know as soon as I have the information.  FAITH - LOVE - HOPE.  Bless you all, and have a great week.  Remember to pray not only for us, but for all that were affected by the works of nature last week.  Thanks for everything.

February 12, 2006 – Yesterday was eight months since Jeff's collapse.  Although to some it seems that he has not come very far, those of us who spend day after day with him see a great deal of improvement in his condition.  He is breathing on his own without the use of a trach.  He has the strength to hold his head up and turn it from side to side.  He has limited speech, but hopefully that will improve. He knows who is who and cooperates with some and not others.  He hears sounds, feels touch, and smells scents.  These are all things that he was not able to accomplish at the beginning.  He has overcome pneumonia two times, and various other infections.  He is strong, determined, stubborn, and will continue to improve.  This past week he has shown great signs of strength and control.  I began placing something in his right hand (even though it is extremely contracted) and told him to put it in his mouth.  He has been successful in doing this over and over again.  He has even shown the staff and visitors what he can do.  Usually he will not perform in front of others, which is totally not like Jeff at all.  He can bring his left foot up and down on command.  If only the people that make the decisions were able to spend more time with him, they too would see the great changes.  We continue our quest to bring Jeff home.  Meetings are scheduled for the near future which should bring us closer to our goal and let us know what we need to do to accomplish this.  Our home will have to undergo some renovations, hopefully not to exceed the financial funding that is provided, but if it does, we will do whatever we have to do to get him home.  This is so very important to our family.  To be able to be a family again and spend time together in our home is what we long so much for.  At times it doesn't seem like eight months have passed, but other times it seems like an eternity.  We thank you again and again for your prayers.  Please continue to pray and believe.  This is what is going to make our hopes and dreams come true (since we have not been successful in winning the lottery).  FAITH - LOVE - HOPE.  BLESS YOU ALL.

February 4, 2006 – Jeff has finally settled down from his move back to Living Center South.  He was very calm and relaxed for the most part the past couple of days.  He continues his treatment for the pneumonia; fortunately the medication can be administered through his feeding tube.  He doesn't seem to like IV's very well.  We are in the process of trying to make arrangements to move him home.  This process will take some time, but will be much better for everyone, Jeff included.  When he is around familiar smells and sounds, he may be able to progress quicker.  The last couple of weeks have not been too productive, but that usually happens when he is ill.  We are hoping that we can go longer than seven weeks this time without a setback.  We are also going to get him back into therapy.  Both the insurance company and Medicaid will not pay for therapy, so we are going to self pay.  He tries so very hard to accomplish the little things, but that is not enough for them to cover the therapy.  Hopefully with a little more time, with self pay, we can soon get some progress that Medicaid will accept and then start paying again.  We are going to start with the therapists at LCS, but if anyone knows someone that would come to LCS and provide Jeff with therapy, we would be willing to talk with them to find out if LCS would allow outsiders to come in.  Let us know if you have any ideas – we hope to get this started as soon as possible.  Thank you again, for praying for Jeff after so many long months.  We would not be able to do this without everyone's support.  We gain our strength from your thoughts and prayers.  You cannot believe what your words of encouragement mean to us.  Whenever we get down, we think of all the people pulling for Jeff and we continue our quest for his recovery.  Thank you all so very, very much.  FAITH, LOVE, HOPE.  BLESS YOU ALL.

January 30, 2006 – Jeff moved back to Living Center South today, Monday, around noon.  He does not handle the moves very well and spent the remainder of the day and evening extremely tense.  His lungs are doing well, although it will take some time for the pneumonia to be completely gone.  He has been having some stomach issues the past few weeks so while he was at the hospital, they tried to address this.  They have changed his food intake and some of his meds to see if this helps.  His weight remains the same, 137 pounds.  Dr. Feinburg will continue to oversee Jeff's treatment, while he is a resident of Living Center South.  Have a great week.  FAITH - LOVE - HOPE.  Bless you all. 

January 23, 2006 – Well, so much for steps in the right directions.  Jeff was running a temp yesterday, so Dr. Livecchi ordered the standard tests, which showed that he had an infection of some sort somewhere.  Today, they located the problem: Jeff has pneumonia, unfortunately in both lungs.  He has been admitted to Geneva General Hospital for treatment.  Dr. Feinburg felt that he could better treat Jeff if he were admitted to Geneva General.  He is in Room 319, very close to the nurse's station.  Hopefully we caught it in the early stages.  Time will tell, and hopefully heal.  This week, more than ever, we need your prayers.  FAITH - LOVE - HOPE.  Bless you all.

January 22, 2006 – Another week has passed us by with only a few changes.  However, those changes are a step in the right direction.  Jeff has definitely learned how to spit in a very significant way.  He has a lot of mucus which usually has to be cleaned out of his mouth about every 1/2 hour.  He has learned that if he coughs hard enough, he can then spit and that nasty stuff is out of his mouth.  He also was sitting in his chair, listening to the music, swinging his leg and moving his head back and forth to the music.  We have witnessed him swinging his leg before, but the head moving to the beat was something new.  Jeff likes to watch MTV, but when he dozes off, I like to change the TV to CMT.  This does not go over very well as he will wake up and yell at me.  The word “yeah” seems to be a definite part of his vocabulary now.  When asked a question, he will shake his head no or say yes; however, he is not always consistent in doing this.  Jeff has gained 11 pounds in the past two weeks; he also seems to be having some stomach issues which make him very stressed.  The staff is looking into this.  They may need to make a change in his feeding schedule.  Take care and let's hope this week is more productive, so I have more to report.  FAITH  -  LOVE  -  HOPE. Bless you all.

January 15, 2006 – Due to the wonderful unseasonable weather this past week, Bruce was able to take Jeff outside on Thursday.  They put Jeff in his wheelchair with his coat on and wrapped in a blanket and out he went for about 50 minutes.  I was at work at the time, but Bruce said he was very content, and of course, he slept for hours when he was placed back into bed.  He has had a very calm week with the exception of two nights, Tuesday and Friday, when he acted like he had a stomach ache.  It is very hard to see him in pain to the point where he yells out, and not know what is bothering him.  His accomplishments this week; Jeff spit at one of the nurses.  Now, like the biting attempt, this is not good, but we all were very excited with his attempt.  He also lifted his head on his own when he was told that they were going to wash his hair in the shower, he lifted it again when they rinsed his hair, and again when I went to place the towel under his head when he was lying in bed.  Jeff will not let his father clean out his mouth with a swab, but if I tell him to open his mouth so I can clean it out, he will open right up.  He said “Grandma” to Grandma Joan, which pleased her immensely.  Jeff seems to be sleeping a lot lately, which we think that he is working so hard to attempt to speak and move when he is awake that he is getting tired.  He is trying desperately to move his right harm.  He has been able to move it in and out and up and down, but not both at the same time.  There is always tomorrow.  That's all I have for this week.  Please continue to pray for us and for Jeff's recovery.  FAITH - LOVE - HOPE  BLESS ALL OF YOU.

January 8, 2006 – This week has been a very calm week for Jeff.  He has been so very calm that he is really making me nervous.  He has been going to sleep at night around 9:00, which means I can actually go home without worrying about him.  He continues to try to speak; this must be very frustrating for him as I believe that he knows what he wants to say, but just can't make his body perform the task.  We have been working very intensely with his arms and hands.  He is beginning to lower his arms on command and remains calm when you work them.  He seems to be following activities in the room more with his eyes, but still will not follow an object if placed close to his face.  He also seems to follow commands a bit more than he was.  I will ask him to look at something specific and he will pause for a bit and then do it.  However, he does not do this consistently, which is very important.  He also attempted to bite a staff member on Friday.  Now this is not really an accomplishment, but when the staff member moved his hand to get it away from Jeff, Jeff moved himself directly towards the staff member's hand and continued to do so wherever he placed his hand.  We have discovered that Jeff likes to sit up, possibly that is why he sat up in bed on Christmas Day.  Bruce and I have been setting him up in bed, but it is difficult to hold him there for very long.  We are going to have the staff place him in his wheelchair instead of the reclining chair, that way he will be in a more vertical position.  We tried this on Friday for a few hours and it seems to go very well.  Progress is very slow, but steady, which is what we have been expecting.  Please remember us in your prayers, as we pray for all of you.  Jeff and I pray regularly, he occasionally will say AMEN at the end of the prayer.  FAITH - HOPE - LOVE

January 1, 2006 - HAPPY NEW YEAR - Last evening, New Year's Eve, I spent with Jeff.  He was very calm and relaxed and performed most of the tasks that I gave him.  When I asked him who he was going to kiss at midnight, he clearly said "MOM".  My husband and I both laughed as we knew that I was not going to be there at midnight.  Jeff's temperature has been fluctuating this week between 100 and 102.7.  He only had a couple of days that he was tense this week, the rest of the time, he was very relaxed.  We continue to exercise his legs and his arms and he is doing very well with this.  His hands are very contracted, so that will be our next project, but we need him to proceed slowly as it is very painful for him.  He has been doing well with his legs, but just started working his arms.  He will bring them down to his waist when you ask him to, but you need to remind him to stay calm.  If he tenses, the contractions get worse.  Last night I was moving the pictures on his wall.  He became very upset when I took them down, but calmed down when he realized that I was going to put them back, just in a different order.  Therapy has told us to move things in his room often so he has a change of scenery.  He has been studying his pictures intensely the past few days.  As a matter of fact, since Christmas, he has been acting very different.  Possibly we did receive our Christmas Miracle that we have been praying for.  He seems very deep in thought much of the time - even when someone is talking to him.  He is also making many different sounds and movements with his mouth and tongue.  He definitely is trying very hard to talk so that we can understand him.  Yesterday I took in a Walkman and placed it on him with his new Eminem CD, he was so very peaceful.  He had a slight smile on his face for about an hour.  He was moving his mouth as if he was singing along with the music (if that's what you call it), but he did not make a sound.  The staff was amazed at his contentment.  FAITH - HOPE - LOVE   Pray for a better year that the last, a year of growth and strength and most of all health for all.  Bless all of you.

December 26, 2005 – We made it through the Christmas Holiday; however, it was a very emotional time for our entire family.  We tried as much as possible to keep our traditional practices, but had to make some adjustments so that we could include Jeff.  It definitely would not have been Christmas without Jeff.  On Christmas Eve at 5:30, our family – 24 of us – gathered at Living Center South in the dining room to have pizza and wings and of course, munchies, with Jeff.  What was supposed to be a no-gift-exchange Christmas turned into an exchange of gifts from the heart.  It reminded us of what the true meaning of Christmas is.  Many tears of sadness and joy were shed, and then there was laughter.  Throughout the night we were joined by friends, a few fellow residents of Living Center South 1, and staff.  Jeff tolerated the evening well, even though it was very warm in the room. 

Christmas Day was not as good as Christmas Eve.  Jeff's temperature rose to 103.7 which raised the concern of the LCS1 staff.  He was under close watch by those on duty and Dr. Livecchi was in constant contact.  Jeff was very peaceful and calm, and much to our surprise, he sat straight up in bed three times.  It really startled his father who was there at the time.  Now we don't have any explanation for this, but it certainly cannot be a bad thing.  His temperature lowered as the day went on, but then started to rise again during the night.  We again included Jeff in our immediate family dinner, having Ham and Scalloped Potatoes hot from the Crock Pot at LCS1.  Jeff was so very peaceful that we all went home early to enjoy an evening at home with our daughter and her family – something that we have not done since June 11th.  I feel that this was Jeff's Christmas present to us.  Family is very important to Jeff and to me.  I am very sorry that we may have missed any visitors Christmas evening, and we thank everyone who visited Christmas Day for taking the time to do so.  It really means a lot to us.  

Thank you to everyone for the Christmas gifts given to Jeff and to us.  We also would like to thank you for the Christmas cards received, many expressing their concern and offering to help in any way.  We need your continued prayers and blessings not only for Jeff, but for our family, this has been a very long road for all of us.  I will close now asking you to remember FAITH, HOPE, LOVE.  This will help us with our quest for Jeff's recovery.  Bless you all. 

December 18, 2005 - Merry Christmas! I probably will not get the chance to provide an update before Christmas, so I would like to take this time to express our wishes for you and your family to have a wonderful Christmas.  We again are going to be blessed with the presence of our family at Living Center South on the evening of Christmas Eve, to spend time as a family with our loving son Jeff.  We also again want to thank you all for your donations, cards, gifts, visits, phone calls, and most of PRAYERS during the past six months.

Jeff continues his (and our) quest for recovery.  He is relating more and more to the staff that cares for him at South.  He calls a few by name when they ask him what their name is.  He has had a fairly good week.  He continues to respond to visitors, some days better than others.  It is December 18th, and we have not made a trip to Geneva General yet this month.  Let's hope we can make it through the entire month without visiting the ER.  Jeff is receiving doses of brain stimulation in moderation, due to the heart condition.  His eyes seem to be very alert and at times he follows not only people, but objects if not placed too close to him.  Yesterday he was given his shower and then taken to sit in the hall by the Christmas Tree.  He seemed to be content and enjoy this.  I really believe this time of year is hard for him as spending time with him family on Christmas was very important to him.  He was visited by the Youth Group of the Bellona Memorial Presbyterian Church.  They sang Christmas Carols to him as they surrounded his bed.  I closely watched him for reaction and it appeared that he was very emotional about this.  His eyes were opened when they started singing and by the time they finished the third carol, he had closed his eyes and his facial expression was one of emotional sadness.  After they left, there was a tear in his eye.  Believe me, it was such a wonderful sight when they were singing to him, that there were tears in my eyes and I was all choked up and not even able to properly thank them when they left. 

Jeff seems to enjoy talking on the telephone, if you can imagine that!  For those of you who don’t know Jeff very well, he loved to communicate via telephone.  He continues to respond to different people when they talk with him on the phone.  He listens and usually tries to answer questions when asked, and tries to repeat certain terms and names.  He also responds with “uh huh” and shakes his head no when he disagrees. 

Please enjoy your Holidays with your family and friends. You never know what tomorrow or even the rest of today has in store for you, as we have well learned.   Bless you all, and again, thanks for everything that you have done to help us through this horrific time in our lives.  FAITH - LOVE - HOPE .  Please continue to pray – it is helping all of us.

December 11, 2005 - I don't really have too much to report this week.  Jeff has been running a fever, elevating at night to 102.8, but only 100.5 during the day hours.  He seems to be much calmer than he has in the past, which really has me concerned.  We requested a chest x-ray, just to be safe, but we don't have the results back yet.  Saturday, he was having a bit of trouble breathing, his oxygen saturation level dropped to 91%, which is not real bad, but not great.  He sounds like he has some phlegm in his throat, but does not seem to be coughing to clear it out.  He was given a shower Saturday, and then I styled his hair; this always seems to make him feel good. (We all know that Jeff likes to look good.)  Something new that we have been trying is holding the telephone up to his ear so people who can not visit, due to illness or lack of time, can talk with him.  His sister was talking with him, and he seemed to be trying to talk back to her, while he did, he moved his right arm and elbow in and out and up and down.  This is something that we haven't seen in the past.  He also talked to my mother on the phone and he said Grandma.  If you wish to call Jeff's room, the number is 315-787-4004; ask for Room 111 at Living Center South.  The staff has done a wonderful job decorating the facility for the season.  We spend so much time there, that it makes it feel like being at home.  Have a great week; I will fill you in again next week.  God Bless and remember FAITH, HOPE, LOVE . . . .   Pray for a Christmas Miracle.  . . . We are!  Today is the sixth-month mark in our quest for Jeff's recovery; let's hope that we continue to make progress in the next six months. 

December 3, 2005 – This week has been a difficult one for us.  Jeff was not feeling well on Sunday, and again started running a fever.  On Monday morning his temp was 103.5° so we made another trip to the ER.  After a multitude of tests were run, it was decided he had an infection in his PIC (Percutaneous Intravenous Catheter) line that was just a couple of weeks old.  They admitted him for observation on Monday and transferred him back to Living Center South on Wednesday.  He seems to be doing well at this time, but does not seem to be as relaxed as he was.  He is going to receive the anti-biotic through Sunday, if possible, using a regular IV site.  This is difficult for him as well as the medical staff at both facilities – it is very hard to place an IV on him.  On a positive note, Dr. Fineburg will be visiting Jeff on a weekly basis at Living Center South for medical examinations.  Dr. Livecchi will continue to treat Jeff's rehabilitation needs.  We now have the best of both worlds as far as Jeff's treatment is concerned.  Both doctors are very interested in Jeff's quest for recovery.  I feel that Jeff is trying so hard to verbally communicate with us that he is getting very frustrated.  I believe that this is the reason for his tenseness. 

Please continue to pray for Jeff's recovery as we continue to pray and encourage him to fight hard.  Jeff is a fighter and is very strong willed, or he would not still be with us.  Bless you all.

November 26, 2005 – I hope that you all had a safe and happy holiday with your family and loved ones.  We were very fortunate and were able to spend the day with Jeff and our family also.  The wonderful people at Living Center South allowed us to have dinner brought in to the dining room, and we were able to take Jeff out of his room for a couple of hours so we enjoyed the holiday as we have in the past, just in a different setting.  The food was great, and we made the best of a bad situation.  Jeff did very well, he had many visitors, in addition to his family, and he seemed very content.  Thank you to everyone who took part in our Thanksgiving Day. 

Jeff seems to be doing better the past few days.  He seems to be more content and doesn't need the morphine as much as he did.  He is running a slight temp, but nothing too serious.  He has started to speak more and more, responding to the nurses and aids that are working with him.  This week the staff has heard him say "you’re welcome", "no", "I don't wanna", and the family has heard him say "I love you", "Sheila", Gramma", and of course "mom".  My mother and sister supplied us with seasonal decorations for his room, consisting of a fiber optic Christmas tree, a snowman (which was probably for me) and a welcome sign that hangs on his door.  He really enjoys the Christmas tree with its soothing lights, and seems to become agitated when I turn it off.  Jeff's nephew Nick, who is three, drew some beautiful pictures for Jeff on Thanksgiving Day and they decorate the walls of his room. 

I have received many emails for Jeff, which I read to him; he really seems content to listen as I explain who they are from and read them to him.   He has finished his anti-fungal medication and at this time is infection-free.  Last night the aids gave him a shower and washed his hair, he really enjoys the showers.  Now, we all know that Jeff likes attention, and he still seems to have that trait.  If people are in the room and no one is paying attention to him, he makes it known that he is there and he needs attention.  

Please continue to pray for a miracle in Jeff's recovery.  Enjoy your family as your prepare for the Christmas Holiday, and please drive carefully on the snow-covered roads.  Visit when you can, write if you are not able to visit, and remember, we are sincerely grateful for everything that you all have done.  FAITH, HOPE, LOVE.  Bless you all.

November 18, 2005 – This week has not been as good as the past weeks for Jeff.  He remained in Geneva General Hospital until Friday afternoon.  He is now back at Living Center South and seems to be quite comfortable.  He will continue the anti-fungal medication for a few more days, just to make sure the yeast infection is completely gone.  He was very stressed for three or four days and his blood pressure and heart rate reached dangerous levels.  It was necessary for morphine to be administered to calm him down.  I feel that he is having trouble with his secretions since the trach was removed.  They did suction him and he rested more comfortably.  It was a very emotional and depressing week for us as we thought we were going to have to say goodbye.  This morning, he had a much needed shower, and seems to be quite content.  He looks so good since his hair was cut.  He is doing great with the mom and dad therapy, we are up to 50 to 75 leg lifts on each leg daily.  He does continue to get therapy in his room, but the insurance company has stopped his therapy in the gym.  He does sit in a chair on a daily basis and is able to hold his head up on his own.  He follows people with his eyes more and more and verbalizes with those who visit, if he is not sleeping. 

I wish you all a Happy Thanksgiving and thank you all for your prayers and concerns for our family as we try to face each day with a positive attitude.  I have received some very nice and encouraging e-mails in the past week; we read them to Jeff and place them in his journal.  Thanks again, and bless you all.

November 12, 2005 – This week has been a struggle for Jeff.  The week started out great with a terrific haircut on Monday, which made him look great.  He was weighed on Tuesday, revealing that he had gained 11 pounds in the past couple of weeks.  Then Wednesday, the tense Jeff returned.  This is usually not a good sign when this happens, usually indicating that he does not feel well, and it must be so frustrating for him to not be able to let us know what is wrong.  He began to run a temp early Thursday morning, and his left arm – where the most recent PIC (Percutaneous Intravenous Catheter) line was placed – began to swell and turn very red.  He was taken to the Emergency Room at Geneva General Hospital early Thursday and then admitted to again run more tests to find out what the problem is.  The test results have not confirmed a diagnosis yet, but the Doctor believes that he may have Candida (a yeast infection), which they started to treat immediately.  He was taken off the antibiotics, as the Doctor feels they’re what are causing the problem.  He remained stressed Thursday, but seemed to feel better on Friday.  Early Friday afternoon, they placed another PIC line (this will be the 6th), in his upper left chest instead of his underarms.  Hopefully this will work better for him.  Friday morning, I was spending time with him before I went to work, and he spoke to me.  He has been trying to tell me something for a long time, but I haven’t been able to understand.  This time it was clear, "I wanna go home mom".  I was so very surprised to hear a complete sentence.  I repeated what he said to him and he said, "uh huh".  We talked for a bit longer and he responded with “uh huh” or by shaking his head no.  Then he peacefully went to sleep. It must be so very frustrating for him to know what he wants to say and do and yet to not be able to perform that function.  I only hope that he does not give up, as I know that in the past he has not always been patient. 

As always, please continue to pray, read the site for weekly updates, and visit when you are able.   Bless each and every one of you.

November 6, 2005 – Jeff’s week ended much better than it started.  He developed a high temp again late Sunday which continued through Monday.  Even though he does this on a regular basis, they need to investigate every time to make sure there is not a problem.  Many tests are taken checking his sputum, urine, and blood.  Again, they found an infection in his sputum.  He was scheduled to have the trach removed early this week, so we thought this would delay the removal, but the doctor felt that the trach was the source of the infection so, he removed it and placed him on strong antibiotics for three weeks.  Jeff is doing well without the trach.  Jeff is really beginning to relate to his therapists, the nursing staff, and his surroundings.  He is responding to different smells, different touches, he is holding his head up on his own when he is in the chair, he is turning his head to look at people when they walk by, and he is putting pressure on his left leg when they stand him up.  He will talk to you when you speak to him, but it is very difficult to understand him.  He does call certain people by name and sometimes calls for people.  We took a DVD player in and he enjoys watching Fast and Furious (both movies).  He also enjoys listening to Eminem; however, I am not so sure that it is my type of music, but I will tolerate it for now (I do find myself moving to the beat now and then. It is the lyrics that are hard for me to get used to).  I try to get him to listen to Country Music Television, but he clearly expresses his displeasure.  Jeff sleeps a lot; this is normal with traumatic brain injury as it takes so much out of them when they are stimulated.  Sleep is a very important part of his recovery as he needs his strength for participating in his therapy sessions.  One of the nurses who worked with Jeff this week was his nurse when he was at St. Mary's and she just could not believe the improvements that he had made since he was at St. Mary's in July.  To us, it seems like days go by without any change, but each step is a step forward, which is better than no steps at all. 

Bless you all and visit when you are able.  If you are not able to visit, you may write to him.  Send your letters to Jeff Carpenter at 2039 Alexander Road, Penn Yan, NY 14527, or you can send email to NYHarleybabe@aol.com and I will read your letters or notes to him.  He has received many cards and letters over the past months and does enjoy listening to me read them. 

We appreciate everything that members of the community have done for us.  I have been negligent in writing thank you's, but I just don't seem to take the time to do this.  I try to spend every spare minute with Jeff and I hope that people will understand that this so important to show our support to him to help him progress.  So, thank you – none of this would be possible without you guys. 

October 30, 2005 – Jeff is doing well at Living Center South.  He finally has adjusted, but I feel that he is much more content due to the new medication that he is on.  His heart rate and his blood pressure seem to be more at normal levels than they were before with the other medication.  Previously he was on medication to help control muscle spasms, but we requested the medication be stopped and he seems to be more relaxed.  Upon research, it was discovered the medication can sometimes cause agitation.  He has received two showers in the past week and enjoyed them; his nurse said he was smiling.  He hadn't had a shower since the night he collapsed.  They are talking of taking the trach out this week, but he appears to have contracted strep throat, so it is uncertain if the trach will come out this week or not.  They will do a throat culture to confirm the strep and then place him on antibiotics.  He also has something on the lens of his left eye.  I noticed this on Saturday afternoon, so the doctor will be checking this on Monday.  He is increasing his vocabulary, he says many different names, I Love You, Uh Huh, and shakes his head no if he disagrees with you.  He usually only vocalized with his mom, but he is starting to talk with others now.  His speech is not clear, but if you listen carefully, you can hear what he is trying to say.  He is still working on using his tongue and his lips to try to pronounce.  He will repeat different sounds when asked to, and he has developed a gag reflex, which is good. 

Please don't hesitate to stop in to visit with Jeff (visits are welcomed and greatly appreciated), but please keep in mind that his immune system is very low and he is very susceptible to disease and infection.  Every day is a struggle for him without added challenges that could cause him further illness.  Cold and flu season is soon approaching, so please plan your visits accordingly.  God Bless You all.

October 20, 2005 – Jeff made the transfer back to Living Center South, Room 111, on Wednesday, October 19th.  He, of course, seems to be a bit tense due to the move, but did have a restful night.  The staff at Living Center South has a fun-filled day of therapy planned for Jeff today.  He will be starting some new medications to regulate his hormone levels and continues to do well with his new heart medication. 

October 15, 2005 – Jeff remains in Geneva General Hospital Room 303.  They continue to run tests, but have determined that he is infection-free and the high fevers are a neurological issue.  They are changing his medication and trying medication to treat the WPW condition, since he cannot have the surgery at this time.  They are also going to try to regulate the fevers with medication.  These changes should make him more comfortable and ease the stress of those caring for him.  He is receiving great care at Geneva General, the doctors and the nursing staff are very attentive to his needs.  He continues to vocalize when his trach is plugged and seems to be very attentive with his eyes.  At times, his terrific personality shows through despite his condition.  He continues to receive therapy and is relating to the therapists well.  Please continue to pray for Jeff, and visit when you can.  God Bless You All.   

October 9, 2005 – Jeff became ill early today.  He was taken to the ER at Geneva General for testing.  At this time, they know that he has an infection, but are not quite sure where. They have admitted him and will continue to give him tests.  He is in room 303 at GGH where he will probably remain for treatment for a couple of days.  He seems to have tolerated the move well this time.  Yesterday, he started to breath through his nose, which is new for him.  Today, he has been maintaining control of his bottom jaw, and is continually practicing closing his mouth.  He seemed to be smiling quite a bit today. 

October 8, 2005 – Jeff moved back into room 111 at Living Center South on Tuesday the 4^th.  He seems to be adjusting well to the move. The first couple of days he was very tense, but this is the pattern that we see when he is introduced to new surroundings.  He has been running a fever this week and he continues to be tested to find out if it is an infection or just a neurological issue.  He had some respiratory distress Thursday and Friday, but seems to be doing better now.  He is receiving therapy on a daily basis and is beginning to relate to his therapists.  It does take him a while to warm up to people.  He continues to move his tongue and remembers what certain people work with him on.  We try to have each person focus on one or two sounds or movements and he relates the movements to that person, which is great.  He has had many visitors and we thank you all for that.  He is doing very well with the visits and I believe that he listens to what is being said and tends to get tense when people leave. 

He seems to enjoy watching and listening to MTV, but I’m not sure that we enjoy it as much as he does.  Please continue to pray and visit when you can.  God Bless you all.

September 30, 2005 – Jeff was moved from ICU to room 221 at Geneva General Thursday evening.  He will most likely remain at GGH until Monday.  If his condition remains good, he should go back to Living Center South, Room 111 on Monday. 

September 29, 2005 – Jeff is in the ICU at Geneva General.  He spiked a fever early Tuesday morning. They found a couple of infections and have him in the ICU only to play it safe due to his heart condition – not because he’s critically ill.  He’s doing okay, but is very stressed. 

September 27, 2005 – Jeff transferred to Living Center South in Geneva on Monday, September 26th.  He made the transfer just fine despite the pouring rain.  He arrived around 1:00 PM and was very tense with all the new surroundings and the new voices, but settled in around 7:00 PM and was doing fine.  He is in room 111 on the first floor with a view of the parking lot and main entrance, so he can see his visitors when they arrive.  Visiting hours are from 10:00 AM to 8:00 PM daily.  He will have therapy in the afternoon for a couple of hours.  When we know that schedule, we will let you know so that you don't schedule a visit during the time he is not able to have visitors. 

September 24, 2005 – Jeff continues to do well. He was very calm yesterday, keeping his wrists at his waist instead of up by his neck. He is very responsive to his speech therapists as he continues to learn how to swallow and make different sounds. Speech was even able to trigger a gag on Friday, which was great. They use frozen lemon swabs to rub on the back of his throat, which he responded with a look of displeasure and even vocalized his dislike. It was really great to watch his expressions! On Tuesday, September 20th we met with the staff at Living Center South in Geneva to discuss Jeff's treatment at a facility closer to home. It was decided that they could meet Jeff's needs and the decision was unanimous that it would benefit everyone concerned to have him closer to all of us. Jeff will make the move on Monday, September 26th, if he remains in a medically stable condition. Living Center South will continue his therapy and try to keep him progressing, however, he will still need our support. As soon as he has moved, and we know his schedule, I will let you know.

September 17, 2005 – Jeff has done very well this week with his health. Respiratory has been plugging his trach at 8:00 AM and leaving it plugged throughout the day until 10:00 PM, when his is placed back on the mist collar for the night. This allows moisture into his body to loosen the secretions. He is suctioned by respiratory twice a day, but very little secretions have been found. This is a huge improvement, as far as his respiratory condition is concerned. He has a very strong cough, which is another good sign. Speech Pathology has been working with Jeff this week. He has started to respond to them. They have provided us with a list of exercises that we can work with him on. This is posted on his room wall so if you visit, feel free to work with him. On Thursday, Jeff was very vocal. He was so loud that his voice could be heard in the hallway. The nurses enjoyed listening to him as he tried to vocalize and experimented with new sounds. Friday, he seemed to be a bit softer with his voice and not as vocal, but still responsive when someone talked with him. The nursing staff at Park Ridge has been wonderful. They work with him when we are not there and try to comfort him if he seems upset. He really does not like to be alone and they realize this and try to accommodate him as much as possible. Jeff's feeding schedule has also been changed this week. He was receiving 90 cc per hour, which has been increased to 135 cc per hour. He is fed from 6:00 AM to 10:00 PM, and receives water flushes on a regular basis. This will introduce his body to a somewhat normal digestive schedule. So far, he seems to be doing well with this. We continue our journey to locate Jeff closer to home. This would allow us to spend more time with Jeff and will allow more family and friends to visit him. He needs all of our support more now than ever as he tries to relearn everything. Please continue to pray for his recovery as we continue to pray for all of you. Bless you all.

September 10, 2005 – Jeff has been moved from ICU to the respiratory floor at Park Ridge Hospital. He does continue to have a slight fever, usually escalating a bit at night. The tests have shown that he again has pseudomonas in his sputum, which Infection Control feels he will continue to battle as long as he has a trach and is not really physically active. He is on the third floor, in room 3321. He again will continue to receive Occupational and Physical Therapy daily. We are going to try to get Speech Therapy approved as well. He really is trying to verbally communicate, but needs instructions on the use of his tongue. Jeff, seems to have made this transition much better than the last few times that he has been moved. To us this is an improvement. He has much more movement with his limbs and is responding to command with the therapist.

September 7, 2005 – I had something ready to report to you, however, Jeff has had a turn of events. My original update was that Jeff continues to receive treatment at Park Ridge Hospital in Greece. He has overcome MRSA (Methicillin-Resistant Staphylococcus Aureus, a common wound pathogen that infects wounds and prevents them from healing), pseudomonas, staff infection and pneumonia. His food intake has been increased and he is beginning to gain back a little weight (he has lost about 25 pounds). He is trying very hard to speak, but has to learn to move his tongue so he can be understood. He receives Physical and Occupational Therapy on a daily basis, but is not receiving Speech Therapy at this time. We continue to work with him on the speech, which he is making progress. He sits in a chair for four to seven hours a day and is able to hold his head up. He is beginning to focus on pictures and has definite different responses to different pictures. We take him outside for brief times, different stimulations are very good for him. His eyes are starting to react to light which is new for him in the past couple of weeks. Jeff enjoys visits from friends and family, he really does not like to be alone. He turns his head and looks at you when you talk with him and if you say something that he disagrees with, he will turn his head away, or he will vocalize in a negative way. He has given us several slight smiles, but most recently did give a full smile.

Now, for the turn of events: Jeff spiked a fever of 104 the early evening of Monday, September 5th. The hospital staff was very quick to act on this and immediately ran a broad range of tests. He continued to maintain the high temperature on Tuesday, and began to have trouble with his vitals. It was decided by the doctors that it would be best to transfer him to the ICU at Park Ridge. The transfer was done very quickly and within a few hours Jeff seemed to become more stable. He remains in ICU, room 2518. Visitors are welcome between the hours of 11:00 am-2:00 pm and 5:00 pm-8:00 pm.

As I write this, Jeff is doing well; he no longer has the fever, but still remains tense. I believe this is due to the change of environment, nursing staff, and his daily routine. His vitals are stable and if he continues to improve, he may be moved out of ICU within the next few days.

We are hoping to move him closer to home and will let you know when that takes place. Meanwhile, visit when you can (if you can afford the gasoline) and please pray daily. Jeff has a very long road ahead of him, but with the support and encouragement from all of us, he will be able to overcome this.

Thank you all for your endless support.

August 12, 2005 – Jeff has been moved to Park Ridge Hospital in Rochester. It is off Exit 23 off 390 and he is in room 2323. He was moved late last night. He will not be returning to St. Mary's at this time.

He has been continuing to make progress.

August 3, 2005 – Jeff is going to be transferred to another facility and at this time we are looking for a place that will best suit his needs.

He is still in a coma, but seems to be slightly alert at times. He is prone to infections and battles them on a regular basis.

He continues to receive extensive therapy at St. Mary's and we feel he benefits from this as he has movement in all his limbs. At times definite "Jeffrey" traits are visible.

July 20, 2005 – The Bottle & Can Drive and the Car Wash were a great success. Thank You to everyone that helped and donated, both time and cans.

Jeff is still at St. Mary's and is continuing to make progress. Although no big miracles yet, the little things mean just as much. He is still trying to talk and he responds to the therapists more and more each day.

July 12, 2005 – Jeff made it safely to St. Mary's Hospital in Rochester yesterday; by the end of the afternoon he had already had physical, occupational, and speech therapy. He is at the West Main Street Facility in Room #5150, and is able to have visitors on weekdays from 4 pm - 8pm, and on weekends from noon - 8pm. He will have the three types of therapy twice per day each day, so will have a very busy schedule; therefore the strict visitation schedule.

July 10, 2005 – This weekend's benefits were both wonderful. Thanks to everyone that helped make the benefits so successful and thanks to everyone that came to show their support. A special Thank You to Wylie J's for letting us bombard their bar and for the bands that donated their time to Jeff (Agonal Rhythm, Not Yet, and 40 Ounce).

Jeff is continuing to make progress with his talking. Hopefully getting him up to St. Mary's on Monday morning will help him to continue progressing.

July 7, 2005 – Well, the Insurance Company finally gave the ok to send Jeff to St. Mary's Hospital in Rochester. He is leaving Sayre, PA and heading to Rochester at 9 am Monday morning. He tried talking today.

July 5, 2005 – Jeff is at the Robert Packer Hospital in Sayre, Pa. He is breathing on his own, opens his eyes, and responds to voices as much as possible. He gets tired very quickly. His parents are trying to get him moved to St. Mary's Hospital and Rehab Center in Rochester so that he can get more physical and occupational therapy. He has been progressing in "little baby steps". It is going to be a long road but his family and friends know that with the support of everyone that knows him, he can get through this.