Happy New Year

Greg and I wish you all a healthy and happy new year. We thank you for standing by us and listening to our story and giving us the strength to face each day.

Today Greg was flipped on his belly for PT to work on strengthening muscles associated with his posture. It is hard for him to maintain good posture because of the weakened neck muscles and by going on his back those muscles can be engaged in a good way. We also went to a meeting of the Spinal Association-Greater Boston Chapter. I was the only caregiver, everyone else was a patient or past patient and meter of the association. The different perspectives and experiences were interesting to listen to and learn from. I think we both appreciated being able to hear a little about life after rehab-life after 5 years or more. They all described it as a process from seeing yourself as a person with this injury, in this wheelchair, etc. to at some point being able to just see and be yourself. They stressed that living an active life was within reach and you just had to be active in creating it.

It is 10:30 on New Year's Eve, Greg is sleeping and I am watching the crazy folks standing and freezing in Times Square and wondering what the ##### is going on. How can life take another one of these left turns, down a road I never knew existed. I can't spend too much time feeling sorry for me, for us, just have to love that man and try to do everything in my power to make our lives the best they can be. With Greg by my side I know we can do it. We will figure it out step by step and  make it work.

Balance, biceps, head and wrists

What can you do if you have balance and use your biceps, head, and wrists? If you are a tetraplegic you can put them all together and learn to move from a sitting position to lying down. It will take Greg months to learn each of the moves necessary and gain the strength, but with hard work he will be able to do it.

It is fascinating for me to watch the PT work with Greg on each aspect of the movement. It requires retraining muscles and the brain. The brain wants to engage muscles that don't function and the muscles that do function have to sometimes move in a new way. It was also a little scary watching Greg balance unassisted. I know his PT knows what Greg can do, but I don't know that yet!

The movement goes something like this:  sitting at the edge of the bed, balancing on 2 arms/wrists, swing one arm between the leg, using the head swing hard to maneuver the hip to the side, using the wrist lift the leg with the bicep to the bed. I am sure I left out a step or 2, and this is just the beginning to get 2 legs on the bed, turned and ready to lay down. Wow!

We had dinner together in one of the lounges overlooking the bay. Greg is getting better using a built up fork and the allows for me to eat at the same time and have some conversation. Feels good to have a semblance of normalcy.  We have been working on things we need to do to come home. There is so much and we try to accomplish one thing each day. All I know is that without the help of friends and family getting our house ready we would not be able to return to our home. Folks at Curtis Lumber are putting in a ramp for us, too.

We just moved in July to our new home. It took us 3 years to find and without Greg's knowledge of renovations, I don't think we could have returned there. He will take charge of the renovations. We will need to make an accessible bathroom downstairs with a barrier free shower. We will come home with a hospital bed, shower chair, wheelchair, cough assist machine, and lots of supplies and of course the knowledge to use them all. We are looking forward to coming home......I think we are definitely ready to get out of the hospital!

And the winner is......

Today Greg picked out his wheelchair-a very important choice given the number of hours he will spend in it. So, it was a tough and a close decision, but the ROVI with red fenders is the winner. Pretty snazzy! Emily says she is going to add 5 stars to it.

It will look something like the image below. Measurements are taken for the right seat size, height and shape, cushion size, type of foot rests, arm rests, trunk support, thigh support, driving mechanism (it will be a joy stick with a ball). The cool thing we found out today is that wheelchairs can have an elevate function and Greg's loaner while he is a rehab has this function. So today, we tried it out and Greg pretty much looked me straight in the eye. So, we hope his wheel chair will have this - also known as the pub function - because he can go right up to a bar and order that beer he has been talking about. Also the ROVI can go down/over a 4 inch lip-most wheelchairs can only do 2 inches.

In OT we talked about adaptive utensils and splints. The therapist created a splint, called a cuff (C-shaped) to fit Greg's electric toothbrush. It is still a challenge to use because it is hard for him to get his fingers in it, but that will come as his strength improves. One arm will be able to help the other.

Hoping you all are safe in winter wonderland-we only had about 1/2 inch here.

Learning how to eat

So, imagine you have limited use of triceps and severely weakened biceps and you have to raise and lower your arm and hand to your face, position a fork to your mouth. This is not an easy task when you tire after a few reps. Imagine that you don't have the strength to stab the food and then the forks slips from your grip because you have no ability to squeeze thumb and first finger. This is what Greg faces on each and every bite.

Typically, I feed Greg most of his meals, but he wants to and needs to try to feed himself. We have some adaptive instruments, but they can only help so much. PT helps work to strengthen Greg and OT helps to put that strength to use and they also help to strengthen him. It is a slow, often tedious and frustrating process.

In discussion with his therapists, we know that the first 6 months are when major gains are seen, but there will be 2 years where we see changes. There can be more after that, but it always a guessing game. When I write that there can major gains, let me explain what that can entail. It can mean strength, it can mean some more range of motion, it can mean that more muscles may fire (fingers may move). It means he can learn to turn himself in bed or eat with more ease or have more arm strength. It may may never mean more than that. But we will continue to work hard, have hope and pray for every gain that is possible.

Just another thank you for all the wonderful cards we receive, the thoughtful messages and the phone calls. The communication keeps us from feeling so isolated and far from family and friends.

Lazy Sunday

Today was just a hang around day, PT was cancelled, so napping was Greg's activity choice and mine was a 2 hour walk. We both needed to clear our heads in our own way. Sometimes we think about what we would be doing in our past life. Sunday's would be lazy mornings, kitchen sink omelette, chores, shopping. We both agreed we would rather be doing that. We have started talking about going home, it is hard to imagine what that will be like. But I will be glad not to have nurses walking  in the room every 2 hours. But I am also nervous about not having them around.

I don't know exactly what life will be like.  How will we maneuver around Plattsburgh? What is and isn't accessible? Our favorite restaurant doesn't have a ramp to get in the front door. I wonder about hiring the care that Greg will need and returning to work. Will help be reliable? A million questions and not many answers today. I do know we will figure them out. Team Lemos is strong.

Goodbye

Today was Emily's last day with us. She returns to Florida for her last semester in grad school. It was so wonderful to have her here for a week. She is moral and physical support and a great person to hug and have a glass of wine with. We will miss her greatly. At the risk of sounding like what a mother is supposed to sound like- I have to say that I am very proud of the woman she has become.

We had a beautiful stroll along the boardwalk in the morning. The sun was shinning and the boats were coming and going. A little later we had lunch (leftover Chinese food-yum) and nap time. I took Emily to the airport and then Greg and I explored the hospital. We had date night in the Lantern room-one of the lounges on the floor with a great view. We played some fun music and danced a few minutes.

Since we have another holiday next week (I can't believe it will be 2016) we continue therapy all weekend without a break. While Greg learns to adapt to function in his environment-it is quite clear he has a long way to go to build up his strength. Along the way he has to be so careful not to overuse his muscles so that he is in too much pain. So, he fights, pain, stiffness, gravity, etc. to do all the exercises. I know I repeat, but he truly is a fighter and he has to be because the road is going to be a long one.

Merry Christmas

Today was full of surprises-even Santa came to visit! We started the day with testing out wheelchair number 4. We tested it over smooth and rough terrain-gravel, flagstone and the boardwalk. Greg is a natural. He has to choose his wheelchair by Tuesday. We go to the wheelchair clinic on that day. He chooses the chair and then they measure him and outfit him for all the necessary attachments and placements. So, for example he will needs trunk and leg supports and a joystick for driving.

Marty and Arlene came for a visit mid afternoon and we did another outing to the boardwalk. Then we showed them the cool gym Greg goes to for most PT and OT sessions. It is amazing the amount of equipment available to individuals at the facility. Rosy and Santa came later and brought wonderful gifts. We also got a chance to chat on the phone and FaceTime with a few other friends and family. Later, we ordered Chinese food for dinner. It was Greg's first non-hospital meal and it was very good! It was nice to laugh about the fortunes in the fortune cookies and just enjoy the holiday.  

So, the feeling that is so strong, that Greg, Emily and I are experiencing is the feeling of being blessed. Friends and family have made a safe space for us to get through this tragic change in our life. Almost every day we receive a card, a text, a phone call offering to help us, expressing love, offering an ear for listening, sending virtual hugs or kisses. We just want to say thank you. Tragedy turned to blessing-what a powerful gift.

Christmas Eve

Today we had a wonderful time outside. The weather started off cloudy, but cleared up and almost hit 70 degrees. Greg's PT was outside for wheelchair mobility. This meant information on how to navigate ramps, gravel, uneven terrain, etc. Our Greg had no problems and had to go out twice because it was so much fun. We took naps in the afternoon-and then enjoyed dinner. We decided to do more window cling art. Emily brought a snowman to go with the Christmas tree. Since Greg was in bed at the time, we practice working as a team or Greg directing his care. He would specify what part of the snowman went where and what outfit it should be wearing. After the snowman, carolers came by and sang songs to all the individuals on the floor. We also celebrated christmas eve with a tradition by Greg, opening one gift a person. Then we enjoyed a homemade caramel apple-yum!

Merry Christmas to everybody.

Games, progress, and food!

Hello all,
Today was a jam packed day with PT and OT. I was able to help by cheering while Greg looked at me skeptically. I was able to help with OT by being an extra set of hands as Greg balanced again on the edge of the bed. Today he leaned from side to side and back and forth. This can be scary for him because he feels like he is going to fall. I have also relearned to assist with the hoyer lift (I had an introduction course in Burlington). This means learning about the different hook placements, how to get Greg in and out the sling, and the differences between getting in and out of bed. While in the gym, we got to see a huge ocean liner pass the gym in the channel. It was nice to see a slightly different view in the gym and something to talk about. During the time Greg and I got to spend together, Mom got some time to do laundry. Greg is still very tired from the last few days and is having to use more energy to breath. It's been a while since he has been this junky and having a lot of secretions.

The other big news from today is that Greg passed the Speech language pathologist (SLP) last test. He is on a regular diet now! No more bask soft diet. During the test, Greg had to eat and swallow successfully salad, grilled cheese, and Oreos. The SLP also brought a holiday game. We had to guess the holiday song based on Christmas. We got all of them, all be it with a few new strange songs created during the process. Anyone heard of oh polka dotted knight? (This was really oh holy night). While today has been long, it's been nice to spend the time with family.  At the moment it's dinner time. Mom is feeding Greg and we just finish reading the cards delivered for the day. Chopped is playing in the background. I love them both very much and am glad that they found each other.

-Emily

A harder day

Greg had to have a procedure done at Mass General yesterday. The doctor there refused to do it because Greg had been off his blood thinner (a short term -24 hour type) for only 1 day. The folks at Spaulding have been doing this for years and have not deviated form procedure-but for some reason this doctor refused. So, Greg had to wait until today and 2 days off the blood thinner. So, 2 days of ambulance rides, bumpy roads, being "tossed" from bed to bed and the procedure (having to do with bladder). So tonight he is wiped out and in pain. But the Greg we all know and and appreciate took this all in stride-not being able to eat and drink after midnight until around 3 for 2 days and all the rides. Just tonight he crashed. Sorry to repeat-be he is amazing, strong and single mined on his recovery.

This morning he worked on balance at the edge of the bed with PT. This is an important skill to build muscle and balance. Previously he had a lot of trouble getting dizzy and not able to bear his weight. Today, however, he "performed" beyond expectations. Not only did he hold his balance for several minutes, but he was able to shift weight slightly left to right and front to back. The PT said his left triceps is getting stronger and now sees hints of his right tricep. It is amazing watching these muscles slowly awaken.

The weeks spent in the company of heath care professionals with family and friend visits and a few forays into the "real world" have me contemplating my world in a different way. I live almost in slow motion except when Greg's care requires a speedy response-but most times it is just a slow pace of movement - fixing a pillow, moving from bed to wheel chair, it is a kind of dance. Will this cause a change in my life, finally get me to stop getting upset over the the little things, concentrate on what's important? Greg needs me in a way he didn't before, but the love we have for each other hasn't changed-we need each other, we love each other What this develops into over the next year will look different, but the depth of our love won't change it will blossom even more.

No Trach!

The stockings were hung on the cork board with care  in hopes that the therapist won't require too much on Christmas........I do believe we get Christmas off, but you never know around here. They push Greg to the max, but it is paying off. He gets stronger every day.

The big news of the day is that Greg's trach was taken out this morning. He already said it is easier to breathe and we are looking forward to some time to escape the floor tomorrow, even venture outside. I am so glad it is a mild week. Greg is also trying out his 3rd wheelchair. This one is much improved over the last and is the favorite so far.  Greg has figured out how to get maximum speed out of it and I am waiting for a flyby the nursing station and one of the nurses cutting the power.

One of the most difficult things to think about is coming home and everything that we have to get done, buy, accomplish. We have a good team helping us, but being from NY and not Massachusetts poses more difficulties.  They are doing a great job getting connected to the organizations in the Plattsburgh area and we hope to have what we need in place by the time we leave. There is a lot of paperwork and I think the scariest thing is the need for home healthcare, finding folks-competent folks that will be able to handle Greg's needs.

I have noticed some extra smiles in the hallway today. We shared some of the cookies brought by our family and friends on Sunday with the staff here. Notice the word some-Greg has been enjoying them, too--OK Emily and I are enjoying them, too!

Having Emily here is awesome. She is quite a young woman and I am very lucky that she is my daughter. Her love and support are so appreciated by Greg and I. But there is more to that, something that is hard to explain. She is just plain wonderful!

Flying to Boston and Decorations

Hello all!
Today is my first full day in Boston. I am spending my winter break from graduate school here. After flying in last night, my friend Erin L. picked me up from the airport and brought me for a quick visit to see mom and Greg. This turned into dinner with Jay and Linda who were also visiting. This morning, I came to visit again. Greg got to attend the first 30 minutes of the Holiday party at Spaulding. This was due to him still having the trach in and needing supervision while he was off the floor. He got his face painted and took a silly picture with mom (see below). We brought up a wooden snowflake ornament to the floor for him to paint after the party. However, I think Greg's favorite moment was when he was allowed to eat a brownie.


After the party, Dee and Dave came to visit. We decorated Greg's window with window clings of a Christmas tree with all of fixings! Also hung stockings from the ...quark board. That's like a fireplace right? Now it's nap time. After our nap, Marty and Arlene came to visit. We all enjoyed time in the lounge and Greg showed off his painted Christmas tree on the window. I'm so glad to be able to spend this time with my family.

-Emily (daughter)

Taking a ride

Today Greg was put on a bike with electrodes to stimulate his leg muscles. So, in fact, he powered the bike. Pretty cool! This will help keep muscle tone and protect from things such as osteoporosis. He also challenged me to a game of backgammon for his OT session. We used the iPad and Greg used a stylus. The therapist did not make it easy for him. He had to use his right arm and work hard to stretch to all areas of the board. Next he had a paraffin treatment on his hands. He has incredibly dry skin-another wonderful result of spinal cord injury. The trreatment took a lot of dead skin off that using a washcloth isn't alleviating.

I don't want to forget the power of the chocolate chip cookie. Greg was able to use tenodesis (the ability to for the thumb and finger to pinch together when moving the wrist upward) to grab a cookie and eat it with gusto. Oh and by the way-he did the same yesterday with a cherry turnover. Maybe there is a theme here-work for sweets!

We are looking forward to this weekend. Emily is coming Saturday night and will stay a week. She has friends in the area, so she will be able to combine hospital visits with some much deserved fun after her tough semester. Dee and Dave Davis will be here on Sunday and my Aunt and Uncle will also be coming.

Monday will be a big day for Greg as his trach will be coming out. We can't wait just for the ability to be more comfortable but also for the freedom this will mean.

The hard work pays off-small increments that can lead to frustration sometimes, but we work through it together-Go Team Lemos/Lesser!

Work, Work, and Paint!

OT & PT had Greg working harder than ever today. Still working on a lot of "pre-skills" which means isolating and understanding muscle usage. Greg worked on feeding skills again with the right hand/arm and  turning lying down. Turning was fascinating to watch-what muscles to use, what position to be in. Turning starts off with a punching motion-almost like boxing-who knew? He also used the arm bike as pictured above. It can move for you, but of course, Greg had to outpace the machine.

After PT we saw several staff and patients in one of the lounges and went in to join them. They were painting the windows with Christmas, Chanukah, and Kwanza symbols. At first it was uncomfortable-what could we do? What could could Greg do? But a wonderful young woman came over, asked Greg if he wanted to paint and he said sure. I told her about the adaptive braces and tools I had in the room. She said go get them and was sure one would work. Well she fixed up a brush for Greg and found a way to position him by a window and with his left hand painted the tree seen below. The window looks over the front of the hospital where there is a playground and the bay.

Some days just go right

Today was one of those good days. Greg was upgraded from basic soft to advanced soft (one step away from regular diet). So food looks like food and not baby food. Although he still has swelling around the titanium hardware placed in his neck from the surgery, he is swallowing well. PT was spent butt mapping (pressure mapping) for the ultimate seat for his wheelchair . She uses a computer program that shows the pressure points and the idea is to get a cushion (air, gel, foam, combo of 2 or 3 of them). With time leftover, our wonderful physical therapist took us outside. What a beautiful day. I think we are very lucky to be in Boston this winter and not last winter. 

OT was good, too. First, arm strength was worked on and then time was spent on correct eating techniques. Who knew what it took to bring a utensil to your mouth? The good news is it looks like the right arm is getting stronger and Greg could use it to eat ice-cream with just a bit of help. The therapist believes it will become so much more useful with hard work. 

More talk was had with the doctor about removing the trach-without a trach, Greg and I will be free to leave the floor ourselves. We can't wait. Being outside lifts Greg's spirits so much.The last activity of the day was a shave. I am definitely improving. Only one nick and I am getting over the fear of giving a close shave. Who knows-maybe my next career is as a barber! Oh and please notice in the pictures, the hair cut is my very first.

Autonomic Dysreflexia

This is one of the "joys" of a spinal cord injury. So what is autonomic dysrefelxia? It is the response brought on by something that would have caused pain or discomfort. For example, if you put your hand on something hot a signal goes to your brain (it actually doesn't go that far because of reflexes-OK A&P experts-you can explain this) and then back again using the spinal cord to remove your hand from the source of pain. Greg doesn't have this "spinal highway" to protect him. So, when something is wrong like a tight shoe, he can experience, high blood pressure, headaches, sweating above the level of injury and various other discomforts. This can signal an emergency so after checking bladder, bowel or pressure issues, call 911. This happened to Greg last night and today again. last night it resolved in minutes, today it took over an hour. I am glad that I had a team around me to teach me what to do and understand this. It is one of the most critical pieces of my education.

It is hard to explain how you feel when your body doesn't do what you want it to do, but to have it react in such a strange way, well that is also inexplicable. I don't know how Greg deals with this day in and day out. He also deals with spasticity now-a reflex muscle contraction-that has now appeared in is left thigh and right forearm/wrist. These muscles just "fire" and the literature says that there may infinite reasons why this happens and in most cases you don't have to be concerned, although it can signal an issue to attend to. In some cases you can use the spasm to do something. Greg is so calm through all of this most of the time-emotional, too-but calm. I am still learning this from him. I know I have a long way to go. Greg is strong, maybe the strongest man I know.

Roller Coaster

Today was a bit of a roller coaster ride and a reminder of how far we have come and how far we still have to go. Greg had so many secretions this morning that respiratory had to come 3 times, alarms were going off because his CO2 levels plummeted. Greg had so much trouble catching his breath. We were both scared. It reminded us of the first days he was off the ventilator. The respiratory nurse explained to us that the trach just makes it harder because it blocks his airway. Greg and I thought that this setback would actually push taking the trach out, but it should not. Greg is adept at using the cough assist machine with a mask and taking the trach out will actually make breathing and coughing easier. So, we are hoping for that step to happen sooner rather than later.

Tim and Lynn came today and had a great visit with us. it was so wonderful to have family here. It meant so much to be able to be with people who love you and will just hang, talk, listen, and love us. We appreciate the distance they came and of course, the cookies and pumpkin bread!

They brought us our mail and it was wonderful reading all the cards folks have sent. We both thought that we would miss everyone from home, but we didn't knew how much. the cards, emails and texts mean so much to us. Off to do the bedtime ritual and then "pass out" on the couch-I think Greg is already out for the night. It is amazing what you can sleep through.

Italian Food

Today was a work day with PT and OT, but it also was a day when dinner showed up and looked like food you wanted to eat. Greg still has swelling in his throat and has a trach and this makes the area to swallow food so much smaller. Because of this, he has a basic soft diet. What does this mean? Greg describes it as baby food. But sometimes you get "real food" and tonight was one of those nights-raviolis, chopped (not pureed) broccoli and peaches.

Just for you card sharks out there, Greg has started working on his card skills. OT is about daily skills and apparently card playing is one of them! In PT Greg is working on sitting at the edge of the bed, but he still get s dizzy. A body that has spent so much time lying done has trouble sitting up without getting lightheaded. We were told that this would improve over time.

I had a wonderful surprise from my Aunty Arlene and Uncle Marty. They came for a visit and then took me out to dinner. We walked to the North end and had a wonderful Italian dinner and then we walked to Faneuil Hall for a light show and I confess-icecream. We walked about 4 miles and it felt great.

Tomorrow is Sunday-our day of rest. But we have visitors coming-Tim, Greg's brother, and Lynn, Greg's mom. It will be wonderful to visit with them. It is hard being away from home, so it will be nice to have some one come to us!

Graduation

Tonight Greg graduated with honors from Clinton Community College. We had a small ceremony for him in his room. President Smith was kind enough to email us a copy of his diploma and a wonderful Spaulding employee printed it out and then found a frame for it. I am so proud of him. Working and going to school is not an easy thing and Greg did it with gusto and good grades. 

Today we also graduated from being restricted to the room because of an infection. We have been liberated and spent some time tooling around our floor, dancing in the lounge and got a tour of the state-of-the-art gym that Greg will now do PT in most of the time. 

I also graduated from Hoyer lift 101-I am now able to transfer Greg to and from the bed on my own. Although I prefer some help for ease and speed. But I am glad that I can be responsive to Greg's needs. There are a lot of things to learn and sometimes it is overwhelming. I just keep trying to remember to take it one day at a time, one step at a time, one new ting at a time.......trying:)

We want to thank everyone for cards, texts, emails, blog comments, phone calls, etc. You have no idea how much this means to us. Having contact from the "outside world" and feeling your love and friendship makes every day better.Tomorrow is another work day, so it is time to get to bed. 

Education

Part of our journey at Spaulding includes education, not just learning, but actually "passing" some areas:  understanding spinal cord injury (skin checks, health), positioning (Greg has to be turned every 2 hours to relieve pressure),  transferring in and out of bed, wheelchair mobility, grooming/bathing, equipment, home accessibility. Today, I passed some of transferring-I am now able to transfer Greg from the wheel chair to the bed and position him on his side. We use a power Hoyer lift that is guided on rails in the ceiling. Greg travels in a sling.

This was very important because quite often Greg gets tired at the end of the day and wants to get back to bed. There have been times when the staff is so busy with other patients that we have had to wait. Waiting has caused him to get very cold, suffer from pain in his neck and me watching the suffering. Now, I can just get him back myself. This independence was such a gift. I really hadn't realized until today that Greg has given almost 100% of his independence and me about 90% to pretty much total strangers. For 2 independent people and one type A (which one of us is that?) this isn't always easy-OK it is pretty hard.

Tomorrow is a an important day for Greg-he graduates Clinton Community College with and Associate in Applied Science in Individual Studies. Greg's major areas were Business, computers and industrial technology. I am so proud of him and he graduates with honors. I have found it very hard to celebrate anything since Greg's accident. My wonderful daughter has taken care of birthday and holiday presents. I know my sister-in-law Betsy and her daughter Charlotte are also helping with Christmas presents. Yesterday, there were Christmas carolers singing in the lobby and I couldn't get out of here fast enough.

It is not that it is making me sad, I just walk around in my little bubble and I don't want to the world to enter or I don't want to enter the world. But sometimes when I force myself it is such a good thing. I went to a meeting today with another caregiver and a patient. There are meetings right on the floor once a month by a local chapter of the National Spinal Cord Injury Association. It was good to be with people who understand what I am going through and for me to listen to there experiences and learn from them. It is one of the reasons why I felt coming to Spaulding would be beneficial. Another, of course, is the kind of therapy Greg would have. That is proving to be true-what someone might consider such small steps, are huge for Greg and we celebrate each and every one.

Working hard!

Greg thought boot camp was tough but he never had to get by OT, PT and everyone else! So today he hit some milestones:  no more vent, eating lunch with cool brace and fork attachment, brushing teeth, sitting on the edge of the bed and holding himself for a few seconds. He had a double on PT and the second session was all strength training. For Greg just bending as if doing a bicep curl and slowly unfolding 15 times is a truly a workout. But that was just the first exercise-he had a full hour to go. But don't worry he had a bit of a massage as a reward at the end.

 I think the toughest part of today was the emotions that went along with each success. Sometimes when you think outside our 4 walls, it can be overwhelming to think about what you are doing and for Greg what you are not doing. But I have to tell you something about Greg Lemos, he is amazing. Through the tears and effort, he tells jokes and gets everyone laughing, even himself. Greg has always made me laugh each day and today was no different. The way we live our life may have changed dramatically, but Greg has not changed.

Greg cruises the hallway!

We broke out of the room for a quick hallway cruise to have lesson number 2 on the power wheelchair. Greg is a natural and impressed the PT with a perfect parking job next to the bed. We hope to have the official OK to leave the room whenever we want by the end of the week. Infection is better, but they always allow a certain amount of time to go by.

Today OT was crazy because of all the possibilities she put out to Greg. The first was the correct brace to hold a stylus and Greg can easily use my iPad to message and e-mail, the phone was a little more challenging because of its smaller size, but Greg A+ Lemos did that, too. He also fed himself for the first time with a cool brace attachment for utensils and worked on picking up cups. She will do more strength training and Greg and I have to start incorporating the other techniques he learned during the day. Although, I don't know how that will happen with so many appointments and "drop ins."

So, one of our unannounced visitors was our case worker who gave our approximate discharge days. Yes, the discharge date is approximated right away to be able to map out our course of action while we are here. So, we are due to leave on January 20. This means that Greg does therapies and we meet with various folks on having the appropriate equipment to be in our home, outfitting our home, getting aids, front door ramps, bathroom and bedroom remodeled, picking a wheelchair, and other things that I don't even know about yet. The good news is, though, we believe we can remodel our new home (we have only been living there for 4 months) and are both so happy about the prospect of returning there. The ramp, hospital bed, and commode have to be there to be able to return and the rest can be finished after returning. If not, we will need accessible housing or Greg will have to go into some kind of rehab facility near home.

Before dinner, I went for a walk along the pier. Spaulding is located right on the water and across from Boston. Nice to try to clear your head-maybe it will work, but it is hard because I keep thinking about what happened, what is happening, what will happen. I know that everyday brings new answers, but it also brings new questions.

While Greg's neck strength is beginning to improve, he stayed in the chair just a bit too long today and started to have a lot of pain. It is interesting that when there is pain in the body of a person with a spinal cord injury there is often a body temperature change. Greg became very cold and then it is hard to warm up, but then you can swing the other way and get to hot and develop a fever. It will get better like everything else.

Tonight Greg will not be hooked up to the ventilator. He will breathe on his own all night. We believe that 2 nights of this and the vent goes away. We look forward to a quieter and uneventful sleep tonight. Good night and thank you for being with us.

What do Chinese Food and Mustaches have in common?

They are both firsts......so today I saw Greg for the first time without a mustache. The beard went about 2 weeks ago.....I have know Greg 4 1/2 years and have never seen him without a beard and mustache. Now, I took a picture and it is entitled scruffy man without mustache:

Not bad, huh? I will shave him tomorrow, should be time, but you never know. And if  you are concerned, I am better at shaving than brushing his teeth!

Today was a much better than yesterday. Sundays are a day of rest at Spaulding and we took advantage. We watched a movie, caught up on some Chicago PD shows and made some phone calls.

If you are wondering about the Chinese food....well I just couldn't face the hospital cafeteria again. I have been eating hospital food pretty much straight for 4 weeks. The exceptions were

• an amazing Thanksgiving meal courtesy of my sister-in-law Jan
• being taken out for a glass of pinot noir and a wonderful turkey/stuffing sandwich at an old tavern in Charlestown by my wonderful Aunty Arlene and Uncle Marty
• and of course the Chinese food I ordered right to the hospital room tonight!

Greg did not have any breathing problems today. Normally we watch the O2 levels as they should stay in the high 90s to 100, but he always has the moments when his lungs get junky and he goes into the 80s, sets off the alarm and the respiratory tech comes running. But today he has been successful in clearing the mucus with only the scheduled respiratory tech visits-no additional runs.

Tonight is the first night of Chanukah and my wonderful daughter sent me a link to a virtual menorah (Chanukah candelabra). I could even light it. The cursor become the match! Then we joined Emily via FaceTime and we watched as she lit her menorah. The lighting was accompanied by Ashley singing Happy Birthday to Chanukah because Emily's menorah is so small it holds birthday candles!

Going to sleep hoping for another good day tomorrow. 

What is it really like?

What does it take to get Greg into a wheel chair-his powered wheel chair?

It takes 2 people to get Greg ready for the day (and I am the extra set of hands) washed, dressed, rolled back and forth as it goes. In between as the secretions get shaken up, we have to call a respiratory tech to do a treatment to get the "gunk"(our official term) for the stuff in his lungs out. So, an hour has past and now I feed him breakfast and in between temperature, blood sugar  etc.is checked, pills are taken and another hour goes by. We roll him back and again to get an abdominal binder on him (it helps with the breathing) and the sling under him. We hook the sling up to a lift and get him to the chair. We see one of his therapists (Speech language path, OT or PT) and then  more respiratory treatments and I feed him lunch, then more therapy and respiratory treatments and then dinner. This is a good day.

Today, however didn't go so smoothly. One of the pills got stuck in his throat. He has to get his pills and food past his trach and past the newly constructed cage in his throat. He has been taking the pills with pudding and why on earth he agreed to take with water, or why on earth the nurse offered this choice, I don't know. Respiratory had to come and suction it out. This left Greg with a sore throat and unable to eat lunch. The whole episode tired him out and the lack of food made it hard for him to concentrate and participate as well as he would have liked in his therapy sessions.

My daughter was in a car accident late morning-she is not hurt, but pretty shaken up. And has to deal with getting the car fixed and trying to meet her school and work obligations. Thank goodness friends came to the rescue for her in Florida. My daughter has been amazing since Greg's accident, coming to NY immediately and being my support and this is just not right for her to have to deal with.

Once you are in the middle of an emotional rollercoaster, the slightest tilt and the accident was more than just a slight tilt, can make your emotions run much higher than normal. In addition, right before we heard from Emily, Greg and I were having a pretty emotional discussion, so needless to say on top of the pill episode we were exhausted emotionally. Finally, Greg was given his night medication which includes a sleep aid, too early. Normally his meds are coordinator to go after the respiratory treatment and to take effect after he goes on the respirator for the evening (which is not an easy transition-Greg breathing on his own and allowing the machine to breath are different. Greg has to be cognizant to make the transition). Taking it too early, also, means he has to be woken up and so he lost 2 hour of precious sleep because it is hard to fall back to sleep. And he will be turned every 2 hours and woken up again and again.

It is hard to write this logically after a day like today, but I am finding writing this blog is helping me get it out of my head and the heaviness pressing on my heart is lifted (as a friend told me it would). I appreciated you reading this and thinking about us.

Where are we?

If you want to visit or send a note:

Gregory Lemos, 6th floor, room 622
C/O Spaulding Rehabilitation Hospital
300 1st Ave
Charlestown, MA 02129

visiting hours:  1-8 weekdays, 11-8 weekends

By phone:  (973) 886-7282 (Cheryl's cell phone)

What happened? What's happening?

Four weeks ago Greg fell 20 feet off of a roof and severely damaged his spinal cord. Luckily he was working with someone on this day (he normally works alone) as he was out of cell phone  service and wouldn't have had the ability to call for help. He was taken to CVPH and then to UVM Medical Center, where we spent 3 weeks. The wonderful folks there put Greg back together again, surgeries/reconstruction to the front and back of his neck. He has a C5//C6 level injury-meaning he can move some of his right and left arms and wrists. His left is stronger and it is expected that with rehabilitation these areas will get stronger.

He has the ability to breathe now with a trachestomy, but is still on a ventilator at night. He spent well over a week on a ventilator without the ability to speak and then had to transition to a trach with a speaking valve with took another week. So, I become somewhat proficient in lip reading-it depends who you ask. The doctors are confident that he will be off the respirator (nights only) soon and the trach eventually. He has intense cough assist treatments, something he will require the rest of his life. However, as he gets stronger, off the respirator, no trach, this will be less intense.

It is unknown how much more function will return, but exercise and training will give Greg the ability to do a fair amount. We are on a journey of years that will require continuous adaptions. Today we are at Spaulding Rehabilitation Hospital with some of the finest doctors and therapists around. He works with the occupational therapist on using his left arm/wrist/hand to begin to learn how to raise his hand to his mouth for the ability to learn to eat, brush teeth, etc. He works with the physical therapist on driving a powered wheel chair and exercises to become stronger. He works with the speech path to swallow with a trach. And that is only after 2 days!

Unfortunately, he was diagnosed with an infection in the bowels and is back on antibiotics. This infection forces him to remain in his room-so our strolls around the floor are on hiatus. Fortunately,we have a good view from the room.

Day 1

The days always start with promise. Greg got dressed for the first time in 3 weeks. We met so many wonderful people, nurses, nursing assistants, respiratory therapists, occupational therapist, physical therapist, speech language path and all the aids and assistants for 3 shifts per day. We even had a spin around the floor. They ask a lot of Greg and as the day wears on he tires and breathing becomes difficult and there are regimens that I have to learn that are difficulty at best, scary at times. But look at that smile and the hope for better days on that amazing face, so we go to sleep and start again.

How about them Red Soxs? Greg's going to Boston!

Hello All,
This is the first update via Blog to inform everyone about Greg's progress. He was accepted in Spaulding Rehabilitation Hospital in Boston and started the road there this morning. Mom is following the ambulance in her car. They will arrive later this afternoon.

Just to review the last few days, the doctor switched the tracheostomy tube to a smaller one. This has allowed Greg to speak without the need for a speaking valve. Greg also passed his swallowing exam and has been allowed three meals! Also Greg has been breathing on his own all day, however still uses the respirator at night to rest.


-Emily