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.
Tuesday, January 30, 2007
Cold and flu season...
Charb has had a cold for the last couple of days, complete with coughing stuffy nose and a temperature - so he's been taking it easy. He has been drinking a lot of fluid, water, juice etc, and he hasn't lost his appetite, so that's a good thing! Hopefully it will pass in a couple days and we can get back to his rigorous daily routine!
Slow but steady progress
Charb did well this week. On Wednesday he visited the eye specialist in Kentville who confirmed that Charbel can see (although the clarity of his vision remains uncertain). He says that since Charbel is still in a phase of recovery, nothing needs to be done with his eyes right now. Eventually he may need surgery to realign his eyes, but he thinks we should wait and see if this can correct itself in time.
Charbel is still having trouble with reading letters and seeing small objects. It is difficult to know whether his inability to read is because his vision is blurry, or because his brain cannot recognize the symbols. We’re hoping that more extensive professional testing can be done to determine the extent of his ability to recognize visual stimulus (hopefully this will be part of the rehab plan in Halifax).
Despite questions about his vision, Charbel has made strides this week in his ability to write. It seems that he is gaining greater control over his right hand and as a result, his writing is much clearer. Over the weekend he wrote several words, such as our names and small messages such as “hello” etc. His writing is improving greatly, which is very exciting. Still, Charb finds writing rather frustrating, and he tends to have trouble with certain letters such as “h” so he just starts scribbling on the board – other letters he doesn’t seem to have problems with.
This weekend Charbel also started doing more things on his own, such as brushing his hair and holding a cup to drink on his own. Charb also started drinking from a straw this week! (videos in the photo album) He’s always thirsty and tells us this by pointing to his throat and making a sign with his hand as if he is taking a drink. Today he had some chocolate milk for the first time and loved it!
We have seen a little progress this week with the left arm and leg (and my little, I mean little) but still it’s progress. He is starting to move the left foot more, and can slightly move the left leg, but still cannot bend the knee or push down with the left foot. The left hand/arm has been improving also, but it is still very slow, and he cannot extend his left elbow so that it is straight. Working on the left side will be important in the coming weeks of rehab so that it continues to get stronger in preparation to stand. The right leg is doing really well, and Charb can bend the right knee, push down with the right foot, and move the right leg up and down.
We tried to help Charbel stand the other day, but it took four people to help him up and have him (almost) standing upright. His core body is still not strong enough to be able to hold himself up, so this is the most important thing (in addition to straightening his angles/feet) in order to start standing and eventually walking. Right now, Charbel experiences some pain when we try to stand him up, because his muscles are very tight in some parts of his body. But we continue to try and sit him up and stand him up so that he can get used to that sensation again and start reusing those muscles.
We have a long road of hard work and recovery ahead but we’re all up to the challenge!
Charbel is still having trouble with reading letters and seeing small objects. It is difficult to know whether his inability to read is because his vision is blurry, or because his brain cannot recognize the symbols. We’re hoping that more extensive professional testing can be done to determine the extent of his ability to recognize visual stimulus (hopefully this will be part of the rehab plan in Halifax).
Despite questions about his vision, Charbel has made strides this week in his ability to write. It seems that he is gaining greater control over his right hand and as a result, his writing is much clearer. Over the weekend he wrote several words, such as our names and small messages such as “hello” etc. His writing is improving greatly, which is very exciting. Still, Charb finds writing rather frustrating, and he tends to have trouble with certain letters such as “h” so he just starts scribbling on the board – other letters he doesn’t seem to have problems with.
This weekend Charbel also started doing more things on his own, such as brushing his hair and holding a cup to drink on his own. Charb also started drinking from a straw this week! (videos in the photo album) He’s always thirsty and tells us this by pointing to his throat and making a sign with his hand as if he is taking a drink. Today he had some chocolate milk for the first time and loved it!
We have seen a little progress this week with the left arm and leg (and my little, I mean little) but still it’s progress. He is starting to move the left foot more, and can slightly move the left leg, but still cannot bend the knee or push down with the left foot. The left hand/arm has been improving also, but it is still very slow, and he cannot extend his left elbow so that it is straight. Working on the left side will be important in the coming weeks of rehab so that it continues to get stronger in preparation to stand. The right leg is doing really well, and Charb can bend the right knee, push down with the right foot, and move the right leg up and down.
We tried to help Charbel stand the other day, but it took four people to help him up and have him (almost) standing upright. His core body is still not strong enough to be able to hold himself up, so this is the most important thing (in addition to straightening his angles/feet) in order to start standing and eventually walking. Right now, Charbel experiences some pain when we try to stand him up, because his muscles are very tight in some parts of his body. But we continue to try and sit him up and stand him up so that he can get used to that sensation again and start reusing those muscles.
We have a long road of hard work and recovery ahead but we’re all up to the challenge!
Sunday, January 21, 2007
Great weekend
Charb had an action packed weekend. He had many friends come to visit, and as always was very happy to see them, and sad to see them go! Charb has been home since Friday, and won't be going back to the hospital until tomorrow afternoon. This weekend, in addition to his usual activities, we took Charbel up to KES (his old high school) to watch his sister, Chantal, wrestle in her first tournament of the season. Charb was definitely in his element there! He had a great time. He had the chance to see some of the wrestling coaches and players that he knew from his days as a wrestler – which meant a lot to him. Plus, he brought some good luck (and good advice) to Chantal who won a very exciting match!
In terms of improvements, Charbel is steadily getting more alert and active every day. This weekend, he was a lot more expressive, and we were able to have normal conversations with him - with a great deal of interaction on his part. It's amazing to know that he understands 100% of what is said to him and around him. For him to be able to ask questions and carry on a conversation is an absolute miracle. On top of all that, he is absolutely hilarious, and we're always laughing. Sometimes it’s difficult to even remember how hard and desperate our lives were only a couple short months ago. We are very, very fortunate.
Please check the photo album link for new photos (Jan07) and videos (Videos January) from this weekend!
In terms of improvements, Charbel is steadily getting more alert and active every day. This weekend, he was a lot more expressive, and we were able to have normal conversations with him - with a great deal of interaction on his part. It's amazing to know that he understands 100% of what is said to him and around him. For him to be able to ask questions and carry on a conversation is an absolute miracle. On top of all that, he is absolutely hilarious, and we're always laughing. Sometimes it’s difficult to even remember how hard and desperate our lives were only a couple short months ago. We are very, very fortunate.
Please check the photo album link for new photos (Jan07) and videos (Videos January) from this weekend!
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