Yesterday's family meeting was a good one. We met with the physiotherapist, speech therapist, occupational therapist, nurse, social worker and had a consult from the Doctor. They provided us with updates on Marie's progress (much of which has been discussed on this blog already) as well as discuss options for the future.
Marie's stay has been extended within this facility to the maximum allowable under the OHIP funding guidelines. This means that she will be staying here until August 11th. The reason they have chosen to offer Marie the 45 day program is to provide her with intensive therapy for as long as they can. Right now Marie is having several hours of therapy 5 days per week. In out patient programs, the amount of OHIP covered therapy is significantly lower.
After Marie's release from Providence, she has a few options for out-patient rehabilitation. The two main options right now are the Toronto Rehabilitation Institute (TRI) or the Royal Victoria Hospital (RVH) in Barrie. The therapists here will be submitting referrals on Marie's behalf to her chosen facilities. Each program comes with it's own set advantages and disadvantages. Right now, Marie is leaning to RVH as her 1st choice.
Out-patient rehabilitation services are often offered on a 1-2x per week basis and generally go for 8 weeks. We will not know the exact amount of therapy Marie will be offered in either facility until they have assessed her. It appears that more therapy may be beneficial to Marie, so we will be looking into advocating for Marie to get more OHIP funded Rehabilitation (if this is possible), or looking into private therapy options. If any of you out there are knowledgeable in this area, please feel free to share your feedback with us here or by emailing me at laura_mdick@hotmail.com, we would love to hear it!
The team here was hesitant to offer any sort of timeline for Marie's re-entry back into the work force. From our research, we have learned that many people continue their recoveries for years after their stroke, but most gains are made during the first year. It has been suggested that 1 year might be their best estimate for Marie's return to work. We are supportive of this (or whatever Marie needs) to allow Marie the time to recover to her fullest potential.
We have learned that overall, recovery from stroke is a difficult thing to estimate. This is due to the complexities and uniqueness of the brain. As well, everyone has different goals for thier recovery, and progresses at different rate.
Our next important meeting will be August 6th, when we go back to Sunnybrook to meet with the doctors about the cause of Marie's stroke and stroke prevention. The doctor here tells us that this team is the top-rated team in Canada for stroke.
Going forward, blog updates will likely be weekly or biweekly. Of course if anything significant happens we will be sure to post it here!
Thanks again for your continued support!
Laura
Wednesday, July 29, 2009
Thursday, July 23, 2009
Independent Steps
This week Marie continued to improve her balance and stability as well as the movement in her left arm. This is largely because of the dedicated practice that she's been giving it and the great team here. Marie is still doing physiotherapy and occupational therapy everyday as well as other activities with physiotherapy assistants and with her visitors.
To give you an idea of what it's like for Marie to do some of her physiotherapy, Marie compares moving her left fingers with moving her right finger with a 50lb weight on it. Often when Marie is doing the exercises she is putting so much effort into it, that you can see her whole body flexed tightly.
Other parts of therapy involve "thinking" about her elbow, wrist, and fingers in an effort to get them to move with a greater range of motion. The therapists also encourage Marie to use visualization techniques among other things. I try to imagine what it is like to "think" about moving my arm that used to move so easily. I can definitely understand (although certainly never completely) why these exercises can get very frustrating for Marie to do. The therapists say that it is all about rebuilding the pathways from her brain to her arm.
This week Marie was reassessed for her balance. Although there are more advanced tests to follow, this week focused on a basic balance test. One month ago, when Marie first got here, she scored 31/56 on her balance. This week, she scored a perfect 56/56! As a result of this, and Marie's significant improvement in avoiding "neglecting" her left side (a very common effect of stroke) she has been granted permission to walk independently on her floor! To say this is a huge step towards regaining her independence would be an understatement! It is awesome and Marie is super excited about it!!! WAY TO GO MARIE!!!
This weekend Marie is "escaping" again. Next week should prove to be an interesting week. We are looking forward to the family meeting we have scheduled for Tuesday. We should have lots of updates for you all then!
Take care,
Laura
To give you an idea of what it's like for Marie to do some of her physiotherapy, Marie compares moving her left fingers with moving her right finger with a 50lb weight on it. Often when Marie is doing the exercises she is putting so much effort into it, that you can see her whole body flexed tightly.
Other parts of therapy involve "thinking" about her elbow, wrist, and fingers in an effort to get them to move with a greater range of motion. The therapists also encourage Marie to use visualization techniques among other things. I try to imagine what it is like to "think" about moving my arm that used to move so easily. I can definitely understand (although certainly never completely) why these exercises can get very frustrating for Marie to do. The therapists say that it is all about rebuilding the pathways from her brain to her arm.
This week Marie was reassessed for her balance. Although there are more advanced tests to follow, this week focused on a basic balance test. One month ago, when Marie first got here, she scored 31/56 on her balance. This week, she scored a perfect 56/56! As a result of this, and Marie's significant improvement in avoiding "neglecting" her left side (a very common effect of stroke) she has been granted permission to walk independently on her floor! To say this is a huge step towards regaining her independence would be an understatement! It is awesome and Marie is super excited about it!!! WAY TO GO MARIE!!!
This weekend Marie is "escaping" again. Next week should prove to be an interesting week. We are looking forward to the family meeting we have scheduled for Tuesday. We should have lots of updates for you all then!
Take care,
Laura
Tuesday, July 21, 2009
Visit with Neurosurgeon
Today Marie went back to Sunnybrook for her follow-up visit with the Neurosurgeon.
He said that she was doing AMAZING, but we all know that! Although we complimented and thanked him, he told us again how wonderful the Barrie Doctors did. He said that the brain swelling usually doesn't happen until the third day (Marie's was on the first), and that they were a huge part of the reason Marie is where she is today.
He also said that he could put her bone flap back in at the end of August sometime. He was going to schedule everything and call us back. This is great news!! We had heard that it may not be until 3-5 months from now!
He said the surgery is cosmetic only, that a person can live without their skull. He said Marie's skull will look almost the same as before. He said that negative side effects of surgery only happen in 1-2% of people. These side effects could include things like infection etc. Marie will likely only spend one night in the ICU after the surgery.
That's today's big news!!
Laura
PS) Marie had a great weekend in Barrie !
He said that she was doing AMAZING, but we all know that! Although we complimented and thanked him, he told us again how wonderful the Barrie Doctors did. He said that the brain swelling usually doesn't happen until the third day (Marie's was on the first), and that they were a huge part of the reason Marie is where she is today.
He also said that he could put her bone flap back in at the end of August sometime. He was going to schedule everything and call us back. This is great news!! We had heard that it may not be until 3-5 months from now!
He said the surgery is cosmetic only, that a person can live without their skull. He said Marie's skull will look almost the same as before. He said that negative side effects of surgery only happen in 1-2% of people. These side effects could include things like infection etc. Marie will likely only spend one night in the ICU after the surgery.
That's today's big news!!
Laura
PS) Marie had a great weekend in Barrie !
Wednesday, July 15, 2009
P-Dub and Straw Happiness :)
A couple of things from this week...
Marie has completed the final leg of her dietary journey. She has been given the "okay" for using drinking straws. Yeah!!!
Marie's left arm is doing well. She's nicknamed it "P-Dub"... for paper weight... it's not what the physiotherapists like, but it is kind of funny :) Jokes aside, Marie has made huge progress with her left arm in the short time she has been here. When she first arrived, she really had no movement in her arm except some bicep strength. Recently, on top of the other progress we've written about, Marie has demonstrated slight movement in her thumb and slight supination of her left arm. Her bicep muscles are becoming stronger, to the point that she can now almost lift her hand to her face. Her shoulder muscles are very strong, as are the arm muscles used to do a "pushing down" motion. She also has some elbow movement. Physio for the next while is likely going to focus on moving Marie's elbow and her hand.
This week, one of the high lights was that we went out to dinner one night. Another fun thing for Marie is that she is being granted another weekend pass. On Friday night, Marie is going to Barrie for a nice relaxing weekend, and will be coming back Sunday night. So, you won't see any updates here until Monday at the earliest :)
In talking to the Doctor today, he said that the latest release date Marie would likely have from here would be August 7th. Although, there are still a lot of missing puzzle pieces to know what her actual release date will be. We have what they call a "family meeting" the week after next to get more information regarding Marie's discharge planning and other items.
I hope you all have a great weekend!
Take care,
Laura
Marie has completed the final leg of her dietary journey. She has been given the "okay" for using drinking straws. Yeah!!!
Marie's left arm is doing well. She's nicknamed it "P-Dub"... for paper weight... it's not what the physiotherapists like, but it is kind of funny :) Jokes aside, Marie has made huge progress with her left arm in the short time she has been here. When she first arrived, she really had no movement in her arm except some bicep strength. Recently, on top of the other progress we've written about, Marie has demonstrated slight movement in her thumb and slight supination of her left arm. Her bicep muscles are becoming stronger, to the point that she can now almost lift her hand to her face. Her shoulder muscles are very strong, as are the arm muscles used to do a "pushing down" motion. She also has some elbow movement. Physio for the next while is likely going to focus on moving Marie's elbow and her hand.
This week, one of the high lights was that we went out to dinner one night. Another fun thing for Marie is that she is being granted another weekend pass. On Friday night, Marie is going to Barrie for a nice relaxing weekend, and will be coming back Sunday night. So, you won't see any updates here until Monday at the earliest :)
In talking to the Doctor today, he said that the latest release date Marie would likely have from here would be August 7th. Although, there are still a lot of missing puzzle pieces to know what her actual release date will be. We have what they call a "family meeting" the week after next to get more information regarding Marie's discharge planning and other items.
I hope you all have a great weekend!
Take care,
Laura
Tuesday, July 14, 2009
Celebration
Marie's Aunt Connie, Uncle Rob and family are hosting a celebration (fundraiser) for Marie. They asked that we post a memo here about the details, and we are happy to do so. Here they are :)
Friday August 28th, 2009
8:00pm-1:00am
Native Friendship Centre
175 Yonge St,
Midland, ON
Tickets are $10
We know the evening will be a fun-filled one! We look forward to celebrating Marie's progress with you!
For tickets, please contact one of Marie's family members, including Marie's cousin Nicole at nicolenewburn17@gmail.com. Details can also be found on Facebook: http://www.facebook.com/home.php?#/event.php?eid=88946754057&ref=mf
Friday August 28th, 2009
8:00pm-1:00am
Native Friendship Centre
175 Yonge St,
Midland, ON
Tickets are $10
We know the evening will be a fun-filled one! We look forward to celebrating Marie's progress with you!
For tickets, please contact one of Marie's family members, including Marie's cousin Nicole at nicolenewburn17@gmail.com. Details can also be found on Facebook: http://www.facebook.com/home.php?#/event.php?eid=88946754057&ref=mf
Monday, July 13, 2009
Walkers and Transfers
This morning, Marie was "upgraded" to allow her to transfer a.k.a. move from a bed to a chair on her own. This is a big step in regaining her independance and she is pleased, although she is already asking about the next step. Further assessment will completed later this week to work towards granting Marie additional Independence to move around in other situations as well.
Although Marie was previously walking with a cane, the physiotherapists now want Marie to walk with a walker. This is so she can focus more on pushing down with her left arm while walking. This helps build stability and also strength in her left arm.
The speech pathologist says that Marie has almost all of her regular speech patterns. Most of the exercises focus on relatively minor things. For example, working on the tone in her voice. We've been doing these exercises for a week now and there is already a big difference. Speech exercises are proving to be the most fun of all of the therapy, especially when we make up our own phrases and sentences.... and you know how good Marie is at improvisation... I'll let you imagine what types of phrases we practice with! Haha!
Although Marie was previously walking with a cane, the physiotherapists now want Marie to walk with a walker. This is so she can focus more on pushing down with her left arm while walking. This helps build stability and also strength in her left arm.
The speech pathologist says that Marie has almost all of her regular speech patterns. Most of the exercises focus on relatively minor things. For example, working on the tone in her voice. We've been doing these exercises for a week now and there is already a big difference. Speech exercises are proving to be the most fun of all of the therapy, especially when we make up our own phrases and sentences.... and you know how good Marie is at improvisation... I'll let you imagine what types of phrases we practice with! Haha!
Sunday, July 12, 2009
Escape
This weekend Marie escaped from rehab! She was granted a weekend pass! First, our apologies to those who we didn't see (which were almost all of you) however we were keeping things very low-key on purpose. We wanted the weekend to be as relaxing as possible, and it was definately that!
We left here on Friday and Marie spent the night at her apartment with her Mom. Her landlord Diny, and Karen the tennant in the other apartment gave Marie quite a warm welcome with cake and flowers! Marie said she had a good night sleep, and she even slept in - for the first time in a long time. Sleeping in definately doesn't happen in the rehab facility with all of the commotion happening in the morning, not to mention that breakfast comes at 7am!
On Saturday, we had breakfast at a restaurant near Marie's house and then headed to the family cottage. We had a very quiet get together at the cottage, and then headed to our grandparent's house who live nearby to stay the night. We also spent Sunday with them at their house. I know they were happy to see her!
Everyone is commenting on how well Marie looks, and noticing how she is gaining strength and stability every day. One part of her appearance that she is not too keen on is that she must wear a hockey helmet when walking around. She has to wear it to protect her precious brain from an accidential bump, which could be very serious even if slight. Marie will need to wear the helmet until her skull is replaced in 2-5 months from now. Even though totally out of her comfort zone (as it would be for most of us I'm sure), Marie has kept her sense of humour about everything. An example of this is that when eating out or going into a public place, Marie says that she just wants to shout out " GO LEAFS GO!!!".
We left here on Friday and Marie spent the night at her apartment with her Mom. Her landlord Diny, and Karen the tennant in the other apartment gave Marie quite a warm welcome with cake and flowers! Marie said she had a good night sleep, and she even slept in - for the first time in a long time. Sleeping in definately doesn't happen in the rehab facility with all of the commotion happening in the morning, not to mention that breakfast comes at 7am!
On Saturday, we had breakfast at a restaurant near Marie's house and then headed to the family cottage. We had a very quiet get together at the cottage, and then headed to our grandparent's house who live nearby to stay the night. We also spent Sunday with them at their house. I know they were happy to see her!
Everyone is commenting on how well Marie looks, and noticing how she is gaining strength and stability every day. One part of her appearance that she is not too keen on is that she must wear a hockey helmet when walking around. She has to wear it to protect her precious brain from an accidential bump, which could be very serious even if slight. Marie will need to wear the helmet until her skull is replaced in 2-5 months from now. Even though totally out of her comfort zone (as it would be for most of us I'm sure), Marie has kept her sense of humour about everything. An example of this is that when eating out or going into a public place, Marie says that she just wants to shout out " GO LEAFS GO!!!".
If I had to guess Marie's favourite part of the weekend, I'd have to say all of the food! She definately took full advantage of all of the non-hospital food!
This week's upcoming events will involve more intensive physio, occupational therapy as well as a few small outings in the evenings.
I hope all of your weekends were just as fun!
Take care,
Laura
PS) Marie finally has got the follow up appointment from her neurosurgeon at Sunnybrook. The appointment will take place the week after next. We are hoping for some answers on why the stroke occured, although we are guessing that if there was anything significant in their findings, they would have called us by now.
Wednesday, July 8, 2009
Hello All,
As Laura said there has been sooo much progress over the last week. Marie and I took it easy this weekend as this past week was her first of full week of Physio and Rehabilitation. On Friday due to some lovely traffic and inclement weather I was only able to visit for a brief period of time. However we did get to spend all day Saturday and Sunday together.
Saturday got off to a bit of a rough start as Marie was a little bit frustrated, although she was feeling better in no time. She started telling me all about the week of physio and how she was able to use her shoulder muscles in her left side to move her arm. As she was showing me this I thought that she has already shown us a mean bicep so this is promising that the movement will continue to move down her arm. Later on while we were watching a movie I was moving her fingers and all of the sudden started to feel some resistance which is how her shoulder started to moving as well. We were and are so excited!
Sunday Marie was allowed to sign out with and have a dinner date with the family. She decided we would go to Jawny Bakers and the whole day was just so excited. When she was outside walking to the restaurant she was so happy. She said being outside and not in a hospital or rehab centre was amazing and she felt like she wanted run down the street, although she opted for the safe option of walking there instead. She had a Sunday for dessert and said it was simply the best thing she has ever eaten. I think the visit out gave her new vigor because after all of the commotion she was still awake and going strong although I bet she slept well Sunday night.
Thanks again to everyone,
Love: Allison
Tuesday, July 7, 2009
Food and Fingers!
Two Quick Notes...
Marie got upgraded to a full, regular meal plan today!!!
AND,
A few times in a row, Marie moved her fingers a little bit!!!
Laura
Marie got upgraded to a full, regular meal plan today!!!
AND,
A few times in a row, Marie moved her fingers a little bit!!!
Laura
Friday, July 3, 2009
All Kinds of Stuff
There's so much to write about from yesterday's appointments with physiotherapy, occupational therapy, and speech pathology that I thought I would write some of them out point form. Here goes....
- Marie's meal plan upgraded to soft foods and "thin" liquids (aka regular liquids)!!! Yipee!! We went downstairs to the gift shop to enjoy a cold green tea to celebrate. As Marie would probably tell you, all of the emotions that go along with having your first "real" drink in 3 weeks really caught up with her. She said through her tears, "if you asked me right now if I wanted a personal chef for the rest of my life or to travel the world" or have this drink right now I would choose this drink! We are all sooooooo glad your experience with thickies is over Marie!
- Marie got her assessment back from physiotherapy (PT). They spent most of the week completing a detailed assessment. Marie and the physiotherapist have made goals for the short-term and long-term. They involve things like balance, endurance, and continuing intensive therapy on her left arm. On Friday Marie was able to do another movement with her left arm, moving it forward on a table slightly. It's great news! It certainly isn't an easy journey, and can get understandably very frustrating for Marie.
- The overall plan for discharge in a rehabilitation facility is largely determined on a day by day or week by week basis. Right now the team here has set a goal for Marie to be discharged from this facility by the end July. These goals however are always constantly reassessed, because among other things, they want to make sure that they can provide the most value possible to Marie. After leaving this facility there are a couple of options that exist, including attending outpatient services 2-3 times per week at a Barrie facility, attending a live-in vocational program in Toronto. Marie will also have surgery again to reimplant the piece of her skull that was removed. The dates for all of these things is to be determined. The one thing that is for sure is that things are moving quickly.
- Because Marie has made such good progress, the team here may start to allow her to take short leaves from the facility as early as this weekend. Motion sickness has been a challenge for Marie (although improving daily). Journeys outside of the hospital will be done with this in mind.
That's it for now!
Laura
PS) Marie has also recently been able to start reading all of the cards, notes, emails, and this blog. I know she really appreciates all of your comments tremendously!
- Marie's meal plan upgraded to soft foods and "thin" liquids (aka regular liquids)!!! Yipee!! We went downstairs to the gift shop to enjoy a cold green tea to celebrate. As Marie would probably tell you, all of the emotions that go along with having your first "real" drink in 3 weeks really caught up with her. She said through her tears, "if you asked me right now if I wanted a personal chef for the rest of my life or to travel the world" or have this drink right now I would choose this drink! We are all sooooooo glad your experience with thickies is over Marie!
- Marie got her assessment back from physiotherapy (PT). They spent most of the week completing a detailed assessment. Marie and the physiotherapist have made goals for the short-term and long-term. They involve things like balance, endurance, and continuing intensive therapy on her left arm. On Friday Marie was able to do another movement with her left arm, moving it forward on a table slightly. It's great news! It certainly isn't an easy journey, and can get understandably very frustrating for Marie.
- The overall plan for discharge in a rehabilitation facility is largely determined on a day by day or week by week basis. Right now the team here has set a goal for Marie to be discharged from this facility by the end July. These goals however are always constantly reassessed, because among other things, they want to make sure that they can provide the most value possible to Marie. After leaving this facility there are a couple of options that exist, including attending outpatient services 2-3 times per week at a Barrie facility, attending a live-in vocational program in Toronto. Marie will also have surgery again to reimplant the piece of her skull that was removed. The dates for all of these things is to be determined. The one thing that is for sure is that things are moving quickly.
- Because Marie has made such good progress, the team here may start to allow her to take short leaves from the facility as early as this weekend. Motion sickness has been a challenge for Marie (although improving daily). Journeys outside of the hospital will be done with this in mind.
That's it for now!
Laura
PS) Marie has also recently been able to start reading all of the cards, notes, emails, and this blog. I know she really appreciates all of your comments tremendously!
Thursday, July 2, 2009
No More Thickies
Marie sent me a text today that I thought I would share with everyone;
"Oh Happy Day, No More Thickies!" - Marie
: )
Love: Allison
"Oh Happy Day, No More Thickies!" - Marie
: )
Love: Allison
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