I posted some pictures of sentences that Charbel wrote over the weekend on his white board. His writing has improved a lot over the past couple of weeks. One reason is because his right hand does not shake nearly as much anymore so he has more control. Another reason is that he can see a little better now.
The funniest thing he wrote came after Chantal told him a short story and asked him to write down a sentence about the story (to test his memory). Well, Charbel wrote something about the story all right, he wrote, "That story sucked" If anyone has ever heard Chantal's stories, they know what he's talking about. Anyway, we all had a good laugh about that one!
Tuesday, February 20, 2007
Sunday, February 18, 2007
Routine
Wow, it has been way too long since I last updated. Our lives have settled in to a routine now, albeit a very hectic one. Charbel continues to progress, but much more slowly than the rapid improvements of late December. In his own words, “I’m stronger.”
I thought that many of you would be interested to know what kinds of things we are working on with Charbel at the moment, and what a typical day for him looks like. We hope this blog is reaching other families in similar situations, and hopefully we can give them some insight into what has worked in our case.
Charb’s Typical Week
Charbel comes home everyday from 12-6pm on the weekdays and stays home all day/night on Friday, Saturday and Sunday.
1 hour of daily physiotherapy at the hospital in the mornings (Monday – Friday)
- working on rolling in bed (which he can do from the right side to the left side)
- sitting up on the edge of the bed (he can hold himself unsupported for a few seconds)
- range of motion exercises
Afternoons at home:
1-2 hours of aggressive physical rehab with Robert and dad
- starts off by stretching the major muscles
- sitting on the edge of the massage table / or getting up on the tilt table
- working on upper body strength by using the hand bicycle
- using major muscles by lifting, kicking, flexing and pointing arms, legs, and feet
- working with the left side of his body to balance with the right (asking him to move the left hand, foot, knee and ankle) – we have seen significant improvement on the left side of his body this past two weeks!
- working on neck control and movement (Charbel leans his head toward the right and down, and we are constantly telling him to put his up and to the center) – small improvements this week on his neck control
3 times per week
- 1 hour massage for neck, shoulders, and ankles and knees (Charb enjoys this greatly and is always very relaxed after the massage)
1-2 hours of speech/memory and visual stimulation (we don’t do all of these every day, but we try to focus on a couple of different ‘games’)
- giving Charbel words to make into sentences
- asking Charbel to pronounce certain letters/sounds clearly (repeating several times)
- asking questions about the past to work on long term memory
- playing guessing games: giving Charbel everyday objects that he must tell us what they are, asking him trivia questions about sports, world capitals, math, and general knowledge to work on memory/recognition
-writing words and sentences on the white board
- moving his tongue around and his lips
-looking at pictures and letters to see if he can recognize the objects and words (so far his vision is still quite impaired and he cannot recognize small letters or pictures)
-asking Charbel to move his eyes and track objects (up until Charbel cannot move his eyes. To follow an object, he must move his entire head)
Areas that need more work:
-Speech: Charbel’s pronunciation has not improved much since he first started talking. We are finding it difficult to understand him because he does not move his lips and it is becoming frustrating for all of us.
-Shot-term memory: it has become evident that Charbel has difficulties recalling information from his working and short term memory. We would like to work on this, but we don’t have many techniques in this area (if anyone has any suggestions, please email omelia@ns.sympatico.ca)
-Vision: we need to get to the point where Charbel can move his eyes and not only his head to track objects. We also need further diagnosis about his vision, which he admits is blurry.
Eating:
-Charbel is ALWAYS hungry and thirsty, and he never fails to let us know!
- Charbie signals to us with his hand when he is thirsty, he has made up a cute signal that he uses often
- Charbel has progressed from eating very mushy foods, to slightly more solid foods that are blended but not liquid.
- Charbel is now drinking on his own with or without a straw and he can also feed himself but he tends to eat VERY quickly so we have to watch him closely!
These are some of the activities that make up Charbel’s day. Keep in mind, that other than Robert, we have no help on a daily basis when Charbel is at home. Mom is responsible for all of the daily grooming and care that goes into keeping Charbel clean and healthy. Dad and Robert work Charbel physically and challenge him on a daily basis to keep on improving. Chantal and I work on Charbel’s speech, vision and memory when we get home from school/work and on the weekends. In the down time (which is rare), Charbel watches movies or hangs out with us at the store and is quite happy to see familiar customers and friends.
We are all very much involved with Charbel’s rehab process, but it is too much for a family to do alone, and without professional guidance. During this integral phase of cognitive and physical rehabilitation, we have come to see some of our limitations, and we are hoping that by going to the NS Rehabilitation Center next month, Charbel will receive extensive treatment.
I thought that many of you would be interested to know what kinds of things we are working on with Charbel at the moment, and what a typical day for him looks like. We hope this blog is reaching other families in similar situations, and hopefully we can give them some insight into what has worked in our case.
Charb’s Typical Week
Charbel comes home everyday from 12-6pm on the weekdays and stays home all day/night on Friday, Saturday and Sunday.
1 hour of daily physiotherapy at the hospital in the mornings (Monday – Friday)
- working on rolling in bed (which he can do from the right side to the left side)
- sitting up on the edge of the bed (he can hold himself unsupported for a few seconds)
- range of motion exercises
Afternoons at home:
1-2 hours of aggressive physical rehab with Robert and dad
- starts off by stretching the major muscles
- sitting on the edge of the massage table / or getting up on the tilt table
- working on upper body strength by using the hand bicycle
- using major muscles by lifting, kicking, flexing and pointing arms, legs, and feet
- working with the left side of his body to balance with the right (asking him to move the left hand, foot, knee and ankle) – we have seen significant improvement on the left side of his body this past two weeks!
- working on neck control and movement (Charbel leans his head toward the right and down, and we are constantly telling him to put his up and to the center) – small improvements this week on his neck control
3 times per week
- 1 hour massage for neck, shoulders, and ankles and knees (Charb enjoys this greatly and is always very relaxed after the massage)
1-2 hours of speech/memory and visual stimulation (we don’t do all of these every day, but we try to focus on a couple of different ‘games’)
- giving Charbel words to make into sentences
- asking Charbel to pronounce certain letters/sounds clearly (repeating several times)
- asking questions about the past to work on long term memory
- playing guessing games: giving Charbel everyday objects that he must tell us what they are, asking him trivia questions about sports, world capitals, math, and general knowledge to work on memory/recognition
-writing words and sentences on the white board
- moving his tongue around and his lips
-looking at pictures and letters to see if he can recognize the objects and words (so far his vision is still quite impaired and he cannot recognize small letters or pictures)
-asking Charbel to move his eyes and track objects (up until Charbel cannot move his eyes. To follow an object, he must move his entire head)
Areas that need more work:
-Speech: Charbel’s pronunciation has not improved much since he first started talking. We are finding it difficult to understand him because he does not move his lips and it is becoming frustrating for all of us.
-Shot-term memory: it has become evident that Charbel has difficulties recalling information from his working and short term memory. We would like to work on this, but we don’t have many techniques in this area (if anyone has any suggestions, please email omelia@ns.sympatico.ca)
-Vision: we need to get to the point where Charbel can move his eyes and not only his head to track objects. We also need further diagnosis about his vision, which he admits is blurry.
Eating:
-Charbel is ALWAYS hungry and thirsty, and he never fails to let us know!
- Charbie signals to us with his hand when he is thirsty, he has made up a cute signal that he uses often
- Charbel has progressed from eating very mushy foods, to slightly more solid foods that are blended but not liquid.
- Charbel is now drinking on his own with or without a straw and he can also feed himself but he tends to eat VERY quickly so we have to watch him closely!
These are some of the activities that make up Charbel’s day. Keep in mind, that other than Robert, we have no help on a daily basis when Charbel is at home. Mom is responsible for all of the daily grooming and care that goes into keeping Charbel clean and healthy. Dad and Robert work Charbel physically and challenge him on a daily basis to keep on improving. Chantal and I work on Charbel’s speech, vision and memory when we get home from school/work and on the weekends. In the down time (which is rare), Charbel watches movies or hangs out with us at the store and is quite happy to see familiar customers and friends.
We are all very much involved with Charbel’s rehab process, but it is too much for a family to do alone, and without professional guidance. During this integral phase of cognitive and physical rehabilitation, we have come to see some of our limitations, and we are hoping that by going to the NS Rehabilitation Center next month, Charbel will receive extensive treatment.
Thursday, February 8, 2007
Posture
This week has been all about posture and core body control for Charbel. As those of you who have visited Charbel recently will know, he has trouble keeping his head/neck up straight. He has a tendency to pull his head to the right. We are constantly telling him to pick up his head and turn it to the left, which he can do, but it takes consistent reminding on our part. As a result of leaning his head/neck over to the right most of the time, his entire posture is affected, and of course, his neck is stiff and sore.
We’ve been trying very hard to get him to stretch out his neck and hold his head in a straight position for more than a few seconds…it has been very challenging so far. To make matters more complicated, his seating in the chair is all wrong, and we are constantly pulling and pushing and lifting him up. It is obvious that he is not comfortable in it, just by looking at him. He also lets us know by constantly complaining!
Yesterday the people that built his custom chair were in to take a look at it and see if any changes can be made to make it more comfortable. We are also trying to make it more vertical so that he is not always leaning backwards, which at this point is counter productive for him.
The good news is that his upper body is gaining strength. Dad and Robert have been sitting him on the table, and he can now hold is own body weight and sit almost straight! (A video of Charb sitting on the table is posted in February Videos). In another development, Robert brought Charbel a ‘regular’ wheel chair, and he can sit upright in it (although again, his posture is not great) and he can even use his hands to wheel himself around (see video in album). We were all very excited about this development, that is to say all of us except Charb who didn’t think that it a great accomplishment at all! He wants to walk, which we all believe in time he will be able to do…
Charb’s legs are getting stronger by the day. The left is still MUCH weaker than the right, but we have seen some improvement in the last week. He has been moving his ankle more, and he is now able to lift his left leg if it is hanging off the side of the bed.
Take care everyone…hard work and miracles!
We’ve been trying very hard to get him to stretch out his neck and hold his head in a straight position for more than a few seconds…it has been very challenging so far. To make matters more complicated, his seating in the chair is all wrong, and we are constantly pulling and pushing and lifting him up. It is obvious that he is not comfortable in it, just by looking at him. He also lets us know by constantly complaining!
Yesterday the people that built his custom chair were in to take a look at it and see if any changes can be made to make it more comfortable. We are also trying to make it more vertical so that he is not always leaning backwards, which at this point is counter productive for him.
The good news is that his upper body is gaining strength. Dad and Robert have been sitting him on the table, and he can now hold is own body weight and sit almost straight! (A video of Charb sitting on the table is posted in February Videos). In another development, Robert brought Charbel a ‘regular’ wheel chair, and he can sit upright in it (although again, his posture is not great) and he can even use his hands to wheel himself around (see video in album). We were all very excited about this development, that is to say all of us except Charb who didn’t think that it a great accomplishment at all! He wants to walk, which we all believe in time he will be able to do…
Charb’s legs are getting stronger by the day. The left is still MUCH weaker than the right, but we have seen some improvement in the last week. He has been moving his ankle more, and he is now able to lift his left leg if it is hanging off the side of the bed.
Take care everyone…hard work and miracles!
Saturday, February 3, 2007
Feeling better
Charb is feeling much better now and is in good spirits. He's been laughing quite a lot this week, which is wonderful to see and hear. He is also a lot more conversational lately, and it is truly amazing how sharp he is! No joke, or comment slips by him!
He's still working hard on physio, but we're hoping to up the intensity now since he is feeling better...
I hope to have some new pictures and videos up by Sunday night.
He's still working hard on physio, but we're hoping to up the intensity now since he is feeling better...
I hope to have some new pictures and videos up by Sunday night.
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