Busy Days!

Here I am again.  Sorry it took me so long.

Things are going well. Bobby continues to have Home Care courtesy of Medicare! He has Physical, Occupational, and Speech Therapy three times a week each, plus a nurse that comes to check on him every so often, plus an aid that comes Mondays, Wednesdays, and Fridays to bathe him, so that I have a little break on these days.  He has speech group on Wednesdays.
On the days that he does not have one of the therapies, I work with him on that modality.

He is still very dedicated to his work, and he is getting stronger on his right leg.  He walks better, and even though he still needs to be followed he needs much less help then before.  He even started to use a regular cane inside the house.  Whenever we go to a doctor, he uses the walker to walk from the parking lot to the office. The wheel chair in the house became his exercise chair, where he has to practice moving back and forth with his right leg while the left (the good one) does nothing. 

The recovery of the arm and hand movement is still very slow. There seems to be a little response on the shoulder area, but it takes time.  We have purchased a machine to exercise his arms. The theory is that we have, like with the leg, teach the arm to move again. By using both arms to move the handles (like the pedals in a bike), we hope to remind the right arm how to move.

The speech is still very problematic.  Although he makes all sorts of sounds, the words only come when prompted or cued.  I have to say, however, that the repetition of words is coming much easier.  He can even say Shella now, which he could not before; I use the automatics theory (ex: good and bad, up and down), and say "Bobby and .... "and he says "Shella".  We are trying an App called Proloquo2go to see if it can help him communicate better.  It is a long process to teach him how to use it, but we (the speech therapist and I) are starting with basic need words, and hopefully he will improve on it.  The yes and no is still a problem, and we are constantly having to reinforce it and give him visual cues. 

We have a few visitors here in the past month to brighten our lives.  And of course help us.  If you are planning a visit (which I love) be prepared to work.  I always make my guests work with something I cant' do alone or simply do not know how to do.

Sally and Roger were here on May 21 and 22, and besides being such great company and fun, and bringing in a delicious Greek Meal, helped me with taking the car for a tune up (unfortunately I don't have a picture of them on this visit!).

Pam and Robin were here June 2 and 3.  They came with bringing a delicious Sheppard pie homemade by Pam, and Robin helped put together the hand exercise machine for us. And we have fun watching the Queens Jubilee with the Brits!

Ana Beatriz and Pedro were here for a week.  They arrived on Tuesday June 5 and left on the 13.  It was wonderful having them here.  They helped a lot and were such good company.  Pedro filled in some holes on the wall, put together the recumbent bike and then but it apart again since it did not work well for Bobby.  They helped me move the furniture in the living room, and went even further, and moved a few things around to make more room for Bobby to walk.  Pedro stayed with Bobby so that Ana could take me out shopping - such needed time off the routine.  Ana and Pedro had the idea of having Zoe and Nico for a sleepover so that we could enjoy them, and Malu and Jason could have movie night (yes, Olivia went to the movies!).  Pedro prepared a delicious BBQ.  Ana left the house immaculate before leaving. Just to name a few of the things they did while here.  I just love them so much.  It was very hard to see them leave....

Malu, Jason, Zoe, Dominic and Olivia continue to be very present in our lives.  Malu has been coming here every Tuesday after Zoe's school and I am going there on Thursdays to enjoy the grand kids while Bob stays home with the aid (Aldaci - yes, he is Brazilian).  And of course whenever possible we see them on weekends. 

I would like to thank everybody that emails me, or calls me, or send cards.  Even if I don't answer the email very promptly, or return the calls on the same day, or do not send thank you cards back, please know that you have been very important for us.  I would like to give a special thanks to Maggie and Stan that almost every week send a lovely card from Maggie's studio.

I am counting the days to July when I will have my friends Tethi and Carlinhos and their daughter Maria here, and then my dear sister Rita will come too.  By then Bobby will have started with outpatient therapy (we will go to the therapy place) and will be able to be more out and about.  We are even trying to plan a quick trip and also a visit to the NY dentist.

Until next time. Thanks for reading and rooting for us. With all our love. 

Home Sweet Home

Here I am writing again.

We are slowly adapting to being home and learning all the ropes.
The most challenging was mastering the morning shower.  But after a few trials and errors it seems we found a way that works. 

Our house feels more like Grand Central Station, with people in and out all the time.

Home Care Service started the week we came home.  We have a nurse, a physical therapist, an occupational therapist and a speech therapist.  Each one of them come about 3 times a week.  I like them and Bob is working well with them too.And he is working well with me too, whenever we have some time.

Bob continues to work hard at this therapy and still in good spirits.
Although we have a wheel chair on the ground floor, one on the first floor, and one on the second floor, he mostly walks using his hemi-walker (a walker for one hand only), and with me guarding him just in case.  He wears a gait belt (I hold this belt from the back while he walks) and splint to hold his right arm to prevent it for hanging down too much and damaging the shoulder.

Ours friends Bruce and Simone came on our first Tuesday at home bringing pizza and salad and joined us for dinner.  Bob had a little bit of wine with dinner for the first time in a long time....

The next day, Wednesday, we had a visit from Achilles and his son Henrique (our godchild).  It was nice having them here for these 5 days, and to see how big and gorgeous Henrique is.  We went for walks together, and as you can see, Bobby did not need to use his wheelchair (we took it just in case), and walked all the way from the house to the mail box and back.

Unfortunately, on the first Saturday home, he had a fall.  I was not holding him from the front as he was going down the step to the den, and he lost his balance and I could not control him. And down he went.  He hurt his face with the glasses frame, but other than that he was fine.  I, on the other hand, was a mess, crying a lot!  I could not lift him by myself and had to call 911.  They came very quickly, picked him up, established that all was well and that he did not need stitches on the face. 

 On the following day it was Mothers day, and we were going to Malu and Jason's, but because of the fall, they transferred the party here.






  Bobby got to meed Olivia for the first time.

 But, when Malu and Jason were leaving, Bob, who was upstairs alone while we were saying our good byes, sitting on the wheel chair, fell again.  We think he must have been trying to reach for this glasses that were on the bedside table and perhaps the wheel chair tipped over. This time nothing happened, and Achilles and Jason were able to lift him up.

I finally found a guy to come and stay with Bob for a few hours a week (3 hours 2 times a week) so that I can take time for myself.  He started last Tuesday.  I am slowly building the confidence to leave him alone with Bob for the 3 hours.  On Tuesday I stayed home and trained him, but on Thursday I left for about 1 of the 3 hours and the other 2 just stayed doing my things and left him in charge.

My friend Brenda once again showed what a great friend she is.  On Tuesday, she brought us dinner.  A delicious shrimp dish. 

Zoe turned 6 on Thursday, and they all came here for dinner on Friday to celebrate with us.  They brought dinner from a nearby Italian restaurant, and I had an ice cream cake for dessert.

Yesterday I took Bobby for a very needed haircut.  I took the opportunity to have a hair cut myself too.

Today we visited the Rodriguez for the first time.  We stopped at Paneras to get lunch, and headed their way. Jason played the role of handrail.  Bob climbed the side steps and walked up the grass area towards the backyard like a pro. It was good being able to do that and lovely to be with them. I was able to play with Zoe and Nico and to hold Olivia and Bob blew bubbles with the kids outside.

Tomorrow our friends Sally and Roger come for a visit again.  We are looking forward to having them here again.

So we go on...One day at a time, working hard.

Thanks for reading and for all the support.

Almost home

Hello everybody

In first place let me tell you that this is Shella writing, not Malu, so the writing may not be so good...

Malu had the baby on the wee hours of Thursday May 3rd. A gorgeous girl called Olivia Celina. I was lucky again and was able to be there at the delivery room, when this big girl (9 pd 7 oz and 19.5 in) arrived. Isn't she beautiful?












Bob is doing well, very anxious to go home. I think I have everything ready for him, but I am sure that when we are actually living there one thing or another may have to be changed.

The stair lifts are working well. Cecilia, Claudio, Lulu, Juju and Rita can attest to that. They came to visit Bob on the weekend of 4/28. I was supposed to meet them for lunch and then we would come to the Rehab to visit with Bob, but Bob surprised them and went to the restaurant too.

The next day Bob went out again, this time to the Japanese restaurant, with Malu, Jason, Zoe, Dominic, Bruce and Simone.

For both outings we only used the walker, not the wheel chair. He is getting stronger with the walking. I still am supposed to hold the gait belt, just in case he looses his balance, but I feel that this is happening less and less, and when it does, he balances himself and goes on walking. 

Debbie was here visiting this week. She arrived Wednesday afternoon and left Friday early evening. It was very good having her here, not only for Bob, but for me too. I was able to see Olivia being born, knowing that Bob was in good company.
I was finally able to sell my car, thanks to Jason's advice regarding the price (I had it too high), and Debbie's dedicated efforts posting it in Craig's List, filtering the emails and finally arranging the meet with the buyer. My friend Brenda helped too, driving with me to meet the buyer. It was such a relief for me. And I am so grateful, for all the help I had with that.

Bob is supposed to have some Home Care.  The visiting nurse should call  within 24 hours of us being home and then they will show up, evaluate Bobby and tell how many hours of therapy he will get, and for how long. Bob is aware that on the days that the therapists do not come to the house, he will have to work with me. That will be interesting.
After home care we will have outpatient therapy. But it is too early to say when and where.

I found a guy that will be helping me twice a week for 3 hours each time. This way I will be able to go out to do stuff and see the kids.

It was hard "moving out" of Jason and Malu's house today.  I am officially back at home tonight on my last night without Bobby. I am afraid of what lays ahead, but I will do my best to take good care of my dear husband.

Once we are settled I will try to write again.

Thanks for reading and for being so supportive. It has been very important for us.

When will Bob leave Kindred?

There have been a lot of new developments since I last wrote. No baby yet though there was a false alarm! I don't know when I will be able to write another post after this one, as my due date is fast approaching but my mom will try to take over for a while. And who knows, maybe resuming writing this blog will be a nice brake for a mom of a newborn?


We now know when Bob will leave Kindred, the skilled nursing facility he has been in since leaving Spaulding. My mom met with Bob's team on the 17th and it was determined that he will leave Kindred on the 7th of May. Bob was adamant about leaving as soon as possible. My mom would have preferred he stay a bit longer because once Bob leaves he will not be getting three therapy sessions daily on weekdays. Bob will receive some sort of home care but that has yet to be arranged. It is important that he continues the rehabilitation process at home and I think he understands that as he has been more willing to work with my mom on their own. After the period of home care expires, or after he is no longer "home-bound", then Bob will continue his rehabilitation at an outpatient clinic. My mom went to visit Spaulding's outpatient clinic in Framingham this morning to check them out. It is one of the options she is considering.
 
As for preparations for Bob's return home, my mom is almost done with her check-list of things to do. The ramps are installed. There are three of them. One from the garage to the basement, one from the deck into the side door and one from the living room into the dining room. My mom's friend Brenda has completed the paint job of this last one. She painted the ramp so that it would blend in with the carpet. One of the stairlifts has also been installed and the other one goes up tomorrow and so do the support bars. There will be nine bars in total, most in the bathrooms and one in the basement.


About two weeks ago Amanda, Bob's occupational therapist from Spaulding, sent Bob a T-shirt in the mail and here he is posing with it:

On the 13th I spend part of the morning with Bob and was surprised to find him getting ready for a field trip when I arrived in his room. I accompanied him, his physical therapist Karen and his speech pathologist Emily to the nearby Roche Brothers supermarket. We walked about a block there while Bob rode in his wheel chair. It was the first time he had been in such a setting since before the stroke. When we got to Roche Brothers Bob and I browsed the perimeter of the inside of the store. He seemed to be taking everything in and enjoyed seeing sights we take for granted. After about ten minutes we met up with Karen who got him standing behind a tall cart. Bob walked pushing the cart with Karen closely behind him for the length of almost two aisles. Emily gave him an exercise in comprehension where he had to find five items from a list after identifying the categories these items belonged in. Here are a few pictures from that day. The first shows Bob walking an aisle. The second shows his hand completing Emily's exercise and identifying the categories of the food items he was asked to "shop" for. The woman next to him is Emily and the one in front of him is Karen. The third picture is of him at the beginning of his visit, wandering along the supermarket.

On the sunday after, Bob went out to dinner for the first time at a restaurant. My mom, Bruce and Simone took Bob out to La Cantina, an Italian restaurant. Everyone had a great time. Here is a picture:

Bob's been walking with the help of his hemi-walker very well. He often walks along the entire second floor hallway and has gone to the dinning room using it, not his wheel-chair on more than one occasion. This is great practice for when he goes home. This level of independence will be good for him and my mom who will have no help from nurses once Bob is back home. Yesterday Karen told us that she is hopeful Bob will walk independently, meaning without a contact person, one day. Here is a short video of Bob my mom shot this afternoon. You can see he is moving his right leg very well as he walks the hallway of the second floor:

Bob's speech and word comprehension is improving as well albeit at a slower pace. He still has a difficult time with "yes" and "no". Bob's utterances are more varied as he tries to communicate in longer sentences. Emily has been giving him worksheets to test his comprehension and he is more successful with one word texts than with sentences but this isn't to say he can't understand them. Bob usually scores between 60% to 80% with those types of exercises. 

One thing hasn't changed since I started to write this blog. Bob never tires of trying. His humor is still intact and his motivation has remained steady. Bob is a fighter and his attitude has helped him (and us!) cope with the effects of his stroke. It's a long fight, but we aren't giving up.

Thanks for reading and keep the positive thoughts and prayers coming.  

After two weeks at Kindred

Tomorrow will mark Bob's two week anniversary at Kindred. He is doing well, participating in his therapies with enthusiasm (most of the time, there was a day when Bob was not too excited about the whole thing but everyone has days like that).

Bob's physical therapist has been working on his balance, sometimes giving him a little shove while he is on his feet. The electronic stimulation has not been very effective at reviving muscles on Bob's right arm. His right leg has showed lots of improvement. Bob goes for walks around his floor with his hemi-walker daily with my mom, most days twice a day. He once even walked to the dinning room on the first floor. Bob's room is on the second floor.

Bob's right hand is less swollen now after lots of massaging, elevation and ultrasound. He continues to wear the compression glove most of the time. Bob still must sleep with the arm brace and the leg brace and he is not protesting wearing these too much now.

"Yes" and "No" are still used interchangeably so unfortunately they are not reliable answers to binary-type questions. Sometimes we can deduce what Bob means when he chooses one over the other based on context, but it isn't always accurate. In the middle of a conversation he will use "yes" or "no" correctly. Bob has been using the word "wait" properly.

My parents still play the traffic game. Today they finished the deck that came with the game. My mom already bought another set of cards with more puzzles. The letter tile game is not played as frequently any longer. Today Bob and my mom played connect-four for the first time. Bob's occupational therapist suggested it would be a good game for exercising counting, planning and tactics.

My mom had the ramps installed at their house this past week. Her friend Brenda offered to paint the ramp in the living room so that it will blend in more. My mom was very touched by this offer and grateful to have such a thoughtful neighbor and friend.

Speaking of friends, I'd like to share a few pictures of friends that came to visit Bob. I mentioned Sally and Roger in my last post. They came to visit from Florida and spent last Friday afternoon and Saturday morning with Bob.

And below is a picture of Bruce and Simone with Bob in his room. They have come to visit Bob every Sunday since the first week he arrived at Spaulding. This picture was taken last Sunday when we crossed paths for the first time since their visit to Rio with my parents. My husband and I took our kids to celebrate Easter with my parents.

Here is the picture of the grandkids and the grandparents after the egg hunt that occurred in Bob's room:

I can't believe it has been a whole week since I last wrote! I think I will follow my uncle Felipe's advice and write once a week until the baby comes. There are about three weeks until my baby's due date! Thanks for reading and keep the positive thoughts and prayers coming.

Movement on the right side

Today Bob had a great physical therapy session, I just had to share some of the video footage my mom captured. I am unable to post long videos but this one captures Bob moving his right foot forward, backward and to the right side as he supports his body weight with his left foot. Later, Bob is able to support his weight on his right leg as he moves his left knee up and down. Unfortunately this part was cut out. I tried posting two videos but had no success, but I hope you enjoy the one I chose:

I think back to when we all celebrated the first time Bob stood up since the stroke. Today brought another cause for celebration. Bob continues to literally take steps towards his recovery.

My kids and I went to visit yesterday and I watched part of is occupational therapy and his speech therapy. I was pleased to see Bob's continued investment in his recovery. It has been almost three months since the stroke and Bob has not lost the drive to improve. He continues to apply himself to all the different kinds of therapies. His speech therapist told me yesterday that the fact that Bob recognizes a wrong word or sound as it comes out of his mouth, is a very good thing.

Bob is adjusting well to his new place. Our family is pleased with the level of care he has been receiving from the therapists. Unfortunately the assessment meeting will only take place on the 17th of April. It will be then that his team of care givers will set goals and determine his long term prospects at Kindred.

Tomorrow marks one week that Bob is at Kindred. He will celebrate with a special visit from old friends from Florida, Roger and Sally.

Thanks for reading and keep the positive thoughts and prayers coming.

Continued Progress

Today Bob had physical therapy, occupational therapy and speech therapy. Unfortunately I cannot report on the first two because Bob can't tell us what happened during them. My mom was present for speech therapy and therefore we have some insight into what went on.

The speech therapist worked on a few simple words and also played with the letter tiles. She varied the game Bob is used to playing by asking him to spell a four letter word after being given five tiles. Bob did not do very well with this game, he formed only three words. Bob still surprises us by uttering words in correct context. For example yesterday, when asked where he wanted to go, Bob said "my room". It's always great to hear his voice.

My mom met Bob's new doctor and she is putting him back on two heart medications that he had been taken off of. The doctor will wait on more week and if everything goes well, which she expects it to, Bob will be put back on Lipitor.

My mom continues to provide Bob with unyielding support and care. She spends every afternoon with Bob. My mom exercises with him, goes for walks with him, massages his arm and hand, and advocates on his behalf. My mom has taken on more responsibilities than are usually expected from a wife and she has done so with no hesitation or resentment. Whether my mom is by Bob's side or not, she is constantly thinking about how to better his predicament. The plans for ramps, support bars and stairlifts have been finalized and these should all be installed in my parents' home by the end of April.

Well, after seventy one posts and over 2600 reads, I have decided to cut back on how often I write this blog. Bob is doing well and continues to progress steadily. The daily surprises are more rare now, so I will write a few times per week instead of daily. I thank the friends and family that read the blog daily and provide encouraging comments and emails; in particular Janice, Stan, Maggie, Diane and José Bernardo. Please continue to check back often or better yet, subscribe to receive email updates. Thanks for reading and keep the positive thoughts and prayers coming.

Another visit from New York

Bob had a good morning at Kindred. When my mom arrived he was doing well. They walked around Bob's corridor for one hundred feet and Bob did well. The physical therapist showed my mom how to provide the minimal assist using a special belt to hold Bob by the waist instead of holding on to his pants' elastic band. This is much more comfortable for Bob.

After Bob was done with his lunch, he had some visitors: My husband and I took our kids as well as his parents, who hadn't seen Bob since last year. Since Bob has a single room with a lot more space (and furniture!) than his room at Spaulding, we were all able to hang out in his room. The four grandparents had a nice time catching up and after a while Bob got tired. While he took a short nap, we headed to the dinning room and sat around talking while the kids watched a movie. After about forty-five minutes we went up to see Bob and say our goodbyes. Here is the picture of Debbie and Jim (Jason's parents) with Bob in his room:

This was the first sunday in a while that Bob had therapy. The physical therapist met him a bit before four in the afternoon. Bob pedaled on a recumbent bike for twenty minutes. He used both legs but just one arm. Tina Turner was playing and it kept the exercise tempo. My mom got a good impression from the therapist who was patient and explained to Bob the reasons he needs to wear his boot to sleep. She convinced him and Bob did put it on before my mom left for the night.

George, Bob's neighbor came and introduced himself. The two of them share a bathroom. George is a very nice guy and it made me feel good to know that Bob will have a friendly person who will check in on him. Bob's last roommate at Spaulding seemed nice but he wasn't very talkative. His roommate before that was a grumpy guy. His first roommate was very nice and he would always start up conversations if we met him in the hallway. My mom and his wife became quite friendly.

Today was my first time at Kindred and it is a very different place than Spaulding. It doesn't have the hospital feel that Spaulding has, it feels more like a long term care place. It is decorated with drapes and nicer chairs, there is even a fire place in the dining room. There is no cafeteria, although the staff has offered my mom food free of charge. I found the staff in general to be attentive and my mom was happy with the nurse and assistant nurse on Bob's floor. We hope he adjusts and has a good stay there, that he continues to improve and progress in this new environment.

Thanks for reading and keep the positive thoughts and prayers coming.

First Full Day at Kindred

Bob had a good day. My mom arrived at lunch time and they ate lunch together. A physical therapist came to evaluate Bob this afternoon so it was a good for him to get some exercise.

Bob did some walking with his hemi-walker, he was tired as a result. He napped in the afternoon.

Bruce and Simone came to visit Bob, the four of them had a nice time together.

It's a short one today, thanks for reading and keep the positive thoughts and prayers coming.

A New Place

Today Bob got into his car for the first time since last December! My mom arrived at Spaulding at 9am and they were on their way to Natick by 10:15am. Bob signed his own discharge papers and said goodbye to his team of therapists and nurses. It was a MUCH less stressful ride than the one to Spaulding. My mom said the car ride was smooth and Bob did very well.

Bob has a room to himself at Kindred. Upon arriving there, my parents were greeted by the rehab coordinator. She provided my parents with an introduction to the facility and the staff that will be part of Bob's team. Bob was aware of his move. When asked where he was and give three choices: hospital, rehab, or home Bob circled rehab.

My mom and Bob ate the lunch provided by rehabilitation hospital and after lunch she went to pick up health records at her house. My mom was back at Kinder for Bob's evaluations. He was evaluated by an occupational therapist and a speech pathologist. Bob will be evaluated by a physical therapist tomorrow. He will have his first physical therapy session on Sunday. Normally there will not be any therapy sessions during the weekends, but since Bob won't have had any therapy since yesterday, they will make an exception. Bob's schedule will be as follows: no therapies during the weekend; during the week he will have one hour of speech therapy, and fifty minutes of physical therapy and fifty minutes of occupational therapy daily.

Bob was given a new wheelchair and hemi-walker. His new doctor talked to my mom about Bob's medications. She felt good about the level of care Bob will be receiving at Kindred.

That's all for today. Thanks for reading and keep the positive thoughts and prayers coming.