Another weekend at home where we all try to relax. However the dog decided to make his escape Friday evening whilst Pauline and I were moving vehicles. He wasn’t wearing his collar due to just having flea drops put on his neck. We searched all his favourite places with no luck. We even left the gate ajar for him all night. Further searches next morning also unsuccessful. We now have to decide what to do when we leave Sunday evening. Notes with the neighbours seems to be all we can do. Steven is upset, but he does have other things more important on his mind, as do we. We’ll keep looking. Whilst at home, Steven admitted that he was really scared (I can’t use the words he really used!!). He was scared of the accident because he keeps thinking about it. He’s scared of the upcoming operation because he doesn’t know the outcome. He’s also scared as to what his future will be. We believe that these are the feelings that are affecting his mind, and this is why he is sometimes abrupt and rude. We have many times tried to reassure him, and to make positives out of negatives, but we do so, knowing that it isn’t us, and we’re not feeling the pain and discomfort. He is frustrated at the length of time it’s taking to put him right, but he also understands that it’s been longer for us, since he was in a coma for such a long time. He hasn’t been given a date for the operation, and he now awaits permissions for his arm operation. He cannot yet leave the hospital as an out-patient despite our pleadings that we all think it be in his best interests. We feel that Steven will need an English language speech therapist, his Spanish is fine, but his English is more of a mumble and is often difficult to understand. His computer skills are fine, as are his music mixing skills, though a little too loud for us!! His conversation level is brilliant, and he can organize his daily life and plan ahead. We feel that the hip operation is all that is needed now to really improve his life.
Best regards Terry
Saturday, 24 September 2011
Saturday, 17 September 2011
17th September 2011
Hiya,
coming to the end of a week's "holiday" with Steven and Paul. Last Sunday Paul took Steven back to the hospital to give me and Pauline a break, and to celebrate our 42nd wedding anniversary. To our surprise, the doctors then gave Steven permission to return home Wednesday evening, because at the moment there's not a lot more that the hospital can do. Steven can do his exercises at home, as he awaits the date for his hip replacement operation, hopefully soon. When we return on Monday we are going to ask if Steven can be an out-patient until his operation. With us, he eats and sleeps much better, and the hospital gain a room. Whilst at home we've all been out and about, shopping, drinks, meals, all the things we should do, late nights, lie-ins, no routine, no noise, and it's been great, making up for our last "holiday" when I was ill. I even took Steven on our motor scooter, much to his delight. His mobility is improving to the extent that he climbs steps and stairs with little or no help, and at a much greater speed and confidence. He also pushes his own wheelchair, and rests when he wants to. If only the pain could disappear Steven would be almost normal if I can use that word. The changes have been remarkable over the last few weeks. He continues to receive support from his friends, and thanks to Jane, another parcel of goodies.
Best regards Terry
coming to the end of a week's "holiday" with Steven and Paul. Last Sunday Paul took Steven back to the hospital to give me and Pauline a break, and to celebrate our 42nd wedding anniversary. To our surprise, the doctors then gave Steven permission to return home Wednesday evening, because at the moment there's not a lot more that the hospital can do. Steven can do his exercises at home, as he awaits the date for his hip replacement operation, hopefully soon. When we return on Monday we are going to ask if Steven can be an out-patient until his operation. With us, he eats and sleeps much better, and the hospital gain a room. Whilst at home we've all been out and about, shopping, drinks, meals, all the things we should do, late nights, lie-ins, no routine, no noise, and it's been great, making up for our last "holiday" when I was ill. I even took Steven on our motor scooter, much to his delight. His mobility is improving to the extent that he climbs steps and stairs with little or no help, and at a much greater speed and confidence. He also pushes his own wheelchair, and rests when he wants to. If only the pain could disappear Steven would be almost normal if I can use that word. The changes have been remarkable over the last few weeks. He continues to receive support from his friends, and thanks to Jane, another parcel of goodies.
Best regards Terry
Saturday, 10 September 2011
10th September 2011
Hiya,
Steven has had permission to have the operation, we await the date. He will be having a complete half pelvis, replaced with a ceramic one. Steven is very worried, but he has to trust the doctors. He hopes that what the doctor is saying comes true re' the absence of real pain, and an improved walking state. This will obviously only be known after the operation. We all feel that with the improvement in walking, and the lack of pain, will also produce a feeling of well-being and a return to normality. His elbow will be done later. His left foot is really improving and may not need an op', the ankle straps are really doing their job and his foot movement has improved considerably, time will tell. His walking is becoming more confident, even climbing stairs unaided. His walking is still slow and painful. He's being evaluated, and due to his general improvement is likely to be an out-patient soon. We will stay at Alzira as out-patient for a while (if that's acceptable) then move back home for the same out-patient treatment at a local hospital. Steven's speech therapist is really impressed with his speech, however this speech therapy is in Spanish, and Steven has said he finds speaking English very difficult, so he may have to have further English speech therapy at a later date. Sorry about any greetings cards, I'll make up for this later, it's difficult to go shopping for cards, and even then invariably the address book is in the wrong place. Doing what we're doing is a logistical nightmare with many things being in the wrong place, whether it's 'phone chargers, documents, pills, toiletries, or clothes. At home at the moment, we're beginning to see the signs of neglect, carpets looking scruffy due to lack of proper cleaning, tiles falling off outside walls due to lack of re-grouting, weeds growing through the patio, all due to lack of time and energy to put things right. When we're home for these two days, we prefer it to be Steven's time, away from the noise and routine of hospital, and we certainly don't want to be working and ignoring him, hence the house neglect.
best regards
Terry
Steven has had permission to have the operation, we await the date. He will be having a complete half pelvis, replaced with a ceramic one. Steven is very worried, but he has to trust the doctors. He hopes that what the doctor is saying comes true re' the absence of real pain, and an improved walking state. This will obviously only be known after the operation. We all feel that with the improvement in walking, and the lack of pain, will also produce a feeling of well-being and a return to normality. His elbow will be done later. His left foot is really improving and may not need an op', the ankle straps are really doing their job and his foot movement has improved considerably, time will tell. His walking is becoming more confident, even climbing stairs unaided. His walking is still slow and painful. He's being evaluated, and due to his general improvement is likely to be an out-patient soon. We will stay at Alzira as out-patient for a while (if that's acceptable) then move back home for the same out-patient treatment at a local hospital. Steven's speech therapist is really impressed with his speech, however this speech therapy is in Spanish, and Steven has said he finds speaking English very difficult, so he may have to have further English speech therapy at a later date. Sorry about any greetings cards, I'll make up for this later, it's difficult to go shopping for cards, and even then invariably the address book is in the wrong place. Doing what we're doing is a logistical nightmare with many things being in the wrong place, whether it's 'phone chargers, documents, pills, toiletries, or clothes. At home at the moment, we're beginning to see the signs of neglect, carpets looking scruffy due to lack of proper cleaning, tiles falling off outside walls due to lack of re-grouting, weeds growing through the patio, all due to lack of time and energy to put things right. When we're home for these two days, we prefer it to be Steven's time, away from the noise and routine of hospital, and we certainly don't want to be working and ignoring him, hence the house neglect.
best regards
Terry
Tuesday, 30 August 2011
31st August 2011
Hiya
I’ve described many times that Steven is walking. I’ve also tried to explain that the “walking” is very primitive, slow, unsteady, and is painful. Steven is gradually getting stronger, more confident, and has a good centre of balance, and now he is being taught how to walk. Remember Steven suffered severe brain injury involving the breaking of several neurons in the inaccessible centre of the brain. These neurons or nerve pathways have had to be re-routed to make the body function correctly in all manner of ways. I should think most of us have “taught” a child to walk, but if you think about it, how do you do it? Generally speaking when a child is at an appropriate age, say 15 months, parents will hold the baby’s hands high, in effect stretching the child’s legs and encouraging the child to move forward. The child moves his/her legs and lo and behold he/she is walking. However, do we actually teach the child to walk? Or does it come natural through the encouragement received? We’ve all gone through this process, and walking comes naturally. Steven has walked, he knows how to walk, but he’s forgotten, and he feels that his body doesn’t belong to him. Consider the movements necessary to walk. All parts of the body are in motion with their own particular job, the toes, instep, ankle, knee, hip, pelvis, shoulders, arms, all have a job to do, and many of these parts were damaged, as well as losing some direct connection to the brain. Steven has to physically think of all this, and “tell” his body what to do, to enable him to walk. The faster he walks, the less time he has to think about what he’s doing. He is doing this through the pain, and with time and an increase in speed, we’re confident his walking will be almost normal. Steven cannot use any sort of walking stick due to the calcification of the left elbow, and because he cannot straighten or bend it fully.
On Tuesday 30th August we had a meeting with a surgeon, and he confirmed that Steven does need a hip operation. He explained that Steven’s left leg was pushed up 1” into his pelvis, breaking the pelvis, and locking the leg into it’s new position. This is the cause of his pain. Hopefully the operation will take place in 2 to 3 weeks time. At the same time they will operate on his left elbow to remove the calcification. The doctor further explained the problem with Steven’s left foot. Although the new foot supports are doing their job in improving the motion of the foot, the instep tendon is stronger than the outstep tendon. If the foot doesn’t improve, and it may once he’s walking better with his new hip, the doctor will consider swapping the tendons. We all felt relieved with the news, and Steven had a good nights sleep.
Best regards Terry
I’ve described many times that Steven is walking. I’ve also tried to explain that the “walking” is very primitive, slow, unsteady, and is painful. Steven is gradually getting stronger, more confident, and has a good centre of balance, and now he is being taught how to walk. Remember Steven suffered severe brain injury involving the breaking of several neurons in the inaccessible centre of the brain. These neurons or nerve pathways have had to be re-routed to make the body function correctly in all manner of ways. I should think most of us have “taught” a child to walk, but if you think about it, how do you do it? Generally speaking when a child is at an appropriate age, say 15 months, parents will hold the baby’s hands high, in effect stretching the child’s legs and encouraging the child to move forward. The child moves his/her legs and lo and behold he/she is walking. However, do we actually teach the child to walk? Or does it come natural through the encouragement received? We’ve all gone through this process, and walking comes naturally. Steven has walked, he knows how to walk, but he’s forgotten, and he feels that his body doesn’t belong to him. Consider the movements necessary to walk. All parts of the body are in motion with their own particular job, the toes, instep, ankle, knee, hip, pelvis, shoulders, arms, all have a job to do, and many of these parts were damaged, as well as losing some direct connection to the brain. Steven has to physically think of all this, and “tell” his body what to do, to enable him to walk. The faster he walks, the less time he has to think about what he’s doing. He is doing this through the pain, and with time and an increase in speed, we’re confident his walking will be almost normal. Steven cannot use any sort of walking stick due to the calcification of the left elbow, and because he cannot straighten or bend it fully.
On Tuesday 30th August we had a meeting with a surgeon, and he confirmed that Steven does need a hip operation. He explained that Steven’s left leg was pushed up 1” into his pelvis, breaking the pelvis, and locking the leg into it’s new position. This is the cause of his pain. Hopefully the operation will take place in 2 to 3 weeks time. At the same time they will operate on his left elbow to remove the calcification. The doctor further explained the problem with Steven’s left foot. Although the new foot supports are doing their job in improving the motion of the foot, the instep tendon is stronger than the outstep tendon. If the foot doesn’t improve, and it may once he’s walking better with his new hip, the doctor will consider swapping the tendons. We all felt relieved with the news, and Steven had a good nights sleep.
Best regards Terry
Thursday, 25 August 2011
25th August 2011
Hiya,
well..........so much a for a 9 day holiday. I suffered with severe back ache for the whole time, plus a good cold which turned out to be virul pneumonia, wonderful!!. Spent almost the whole time in bed, and certainly indoors. Didn't do anything or go anywhere because Pauline isn't strong enough to handle Steven and his wheelchair (especially now that she herself has lost a lot of weight, she is now officially 4kgs below her recommended BMI). Steven insisted he was fine, being away from the hospital atmosphere and noise. We ate take-away pizza, burger, and fis and chips, much different to hospital food. Thank goodness for Barbra, Rene, and Pablo, all popping round to cheer up Steven, thank you, and thank you for a marvellous barbie. So...... no changes at all, except for a toothache for Steven, an infection of the nerves probably caused by lack of maintainence in the first 4 months or so, when we couldn't clean his teeth at all. Anti-biotics have removed the pain. We returned to the hospital, only for Steven to catch my cold, will it never end?? He put up with it for 3 days then gave in and spent 2 days in bed and not going to physio'. Steven is still in pain from his hip. He continues to try to walk, but until he gets some pain-management in whatever form it takes, it's going to continue to be slow work. So all in all no changes.
best regards
Terry
well..........so much a for a 9 day holiday. I suffered with severe back ache for the whole time, plus a good cold which turned out to be virul pneumonia, wonderful!!. Spent almost the whole time in bed, and certainly indoors. Didn't do anything or go anywhere because Pauline isn't strong enough to handle Steven and his wheelchair (especially now that she herself has lost a lot of weight, she is now officially 4kgs below her recommended BMI). Steven insisted he was fine, being away from the hospital atmosphere and noise. We ate take-away pizza, burger, and fis and chips, much different to hospital food. Thank goodness for Barbra, Rene, and Pablo, all popping round to cheer up Steven, thank you, and thank you for a marvellous barbie. So...... no changes at all, except for a toothache for Steven, an infection of the nerves probably caused by lack of maintainence in the first 4 months or so, when we couldn't clean his teeth at all. Anti-biotics have removed the pain. We returned to the hospital, only for Steven to catch my cold, will it never end?? He put up with it for 3 days then gave in and spent 2 days in bed and not going to physio'. Steven is still in pain from his hip. He continues to try to walk, but until he gets some pain-management in whatever form it takes, it's going to continue to be slow work. So all in all no changes.
best regards
Terry
Thursday, 11 August 2011
11th August 2011
Hiya,
not a lot has happened since last update. Steven continues to try to work hard but is prevented from doing so by sheer pain from his hip. Today, Thursday, he has returned to his wheelchair, to reduce the amount of time walking, and therefore reduce the pain. Painkillers do not help. One downside is that he continues to be abrupt with his speaking, with no thought of others. He will not interact with other patients and carers, despite their great respect for what he's achieved. He misunderstands this as noseyness. He cannot do any wrong, and if criticized by anyone, gets very angry. This isn't the Steven we know and we just hope that over time, he'll regain his social awareness. He has retained his intelligence so he's fully aware of what's happened to him, and this makes him very sad, and he thinks worryingly about the quality of his future life. We don't think he's accepted what's happened to him, and understandably he feels very bitter. We have been told to gently tell Steven when he does any wrong, we've tried, but he won't accept the advice given. It's all very sad, but we have to continue trying. He has to think positive, he says he does, but then he gets depressed again. He has regained an interest in computers and music, and this keeps him in touch with the outide world, and takes his mind temporarily off his problems. From Friday 12th until 22nd August, he has been given permission to have a holiday at home. This is good news, it will take him away from the routine, noise, and lack of privacy at the hospital, hopefully his "batteries" will be re-charged to face what may be a traumatic time, if he has the hip replacement operation.
best regards
Terry
not a lot has happened since last update. Steven continues to try to work hard but is prevented from doing so by sheer pain from his hip. Today, Thursday, he has returned to his wheelchair, to reduce the amount of time walking, and therefore reduce the pain. Painkillers do not help. One downside is that he continues to be abrupt with his speaking, with no thought of others. He will not interact with other patients and carers, despite their great respect for what he's achieved. He misunderstands this as noseyness. He cannot do any wrong, and if criticized by anyone, gets very angry. This isn't the Steven we know and we just hope that over time, he'll regain his social awareness. He has retained his intelligence so he's fully aware of what's happened to him, and this makes him very sad, and he thinks worryingly about the quality of his future life. We don't think he's accepted what's happened to him, and understandably he feels very bitter. We have been told to gently tell Steven when he does any wrong, we've tried, but he won't accept the advice given. It's all very sad, but we have to continue trying. He has to think positive, he says he does, but then he gets depressed again. He has regained an interest in computers and music, and this keeps him in touch with the outide world, and takes his mind temporarily off his problems. From Friday 12th until 22nd August, he has been given permission to have a holiday at home. This is good news, it will take him away from the routine, noise, and lack of privacy at the hospital, hopefully his "batteries" will be re-charged to face what may be a traumatic time, if he has the hip replacement operation.
best regards
Terry
Friday, 5 August 2011
5th August 2011
Another good and busy weekend. Due to Steven’s slight improvement in walking, we visited a local sports goods store, and bought him a good pair of Nike trainers. With the new fixing clips for his ankle support, he felt the improvement in his walking immediately, as we could tell from the broad smile on his face. His walk was clearer and faster, with a lot of confidence. However this produces a lot of hip pain. We’ve had discussions about the hip, and we’ve all come to same conclusion that it would be better if he could have a hip replacement operation, because it would remove the existing chance of pain, and improve his walking and general well-being, even if an early operation had the possibility of another operation in a few years time. However Steven can only do this with the agreement of the doctors. We await their opinion. Steven desperately wants to return home, but he and us feel that it would be better to have the hip, and the elbow operations at the earliest opportunity. The danger is that if he goes home and comes under the control of a local hospital, he will go to the end of their waiting list. He's perhaps better of where he is. Last Saturday and Sunday morning were just relaxing times for all of us. No timetable, no noises except for Steven’s music, talking, or sleep or read when we wanted, lovely. Sunday afternoon we picked up Rene and we all went to Benidorm, Steven in the back seat of the car for the first time. He was nervous, but otherwise no problems. At Benidorm we walked around a small shopping area, with Steven saying that this is the first time he’d walked in public for a long time and that it felt weird. At one point we sat on a bench for a rest, and we were soon bothered by a local drunk asking for a cigarette. We ignored him, and I joked to Steven that if there was a problem watch my back. However this comment drew the comment from Steven that he was aware that he couldn’t protect anyone in his condition, and didn’t know when he would be able to. This upset him greatly, especially as he was with Rene, a prime concern for him at the moment. The drunk went on his way and we did our best to lighten the mood especially as the drunk took a full pack of cigarettes out of his pocket?? The walking though paid a toll for Steven, the pain in his hip was intense. We hope the doctors listen to Steven’s pleas for an operation. We changed over car contents, and Paul took Steven back to the hospital, whilst we returned home. For a short time Steven has been suffering with toothache. A visit to the hospital dentist revealed that he had at least 2 broken teeth, as a result of the accident, and were only now beginning to cause problems. We’ve been told that the Health Service will bear the cost of the removal of the teeth, but will not cover the cost of any subsequent repair or replacement. Steven has made amazing progress since coming out of his coma, but we all still have a huge sense of anger at what’s happened to him, and to us as a family. It’s as though when there’s an improvement, there’s a setback. I’ve mentioned this so many times before, but it doesn’t get any easier. And there’s nothing we can do to prevent the setbacks, nor anything we can do to help Steven. It’s as though so many people are against us. We can understand the hospitals’ reluctance to spend money on operations and after care due to financial restrictions. Then there’s the insurance who have a responsibility to their owners or shareholders to reduce costs, and therefore payments. Then there’s the Courts who are so overwhelmed with caseloads. Then there’s the person who did this to Steven. There is nowhere where we can vent our anger and frustration. We are totally dependant on all manner of different organisations and people. In the middle of all this is Steven suffering both physically and mentally. If only everyone was able to pull together to look after Steven’s concerns, he would get better more quickly, and therefore ultimately reduce costs. All we can do is push for this to happen, and encourage Steven the best way we can, but there’s only so much we can say and do, it’s all been said and done before. Your messages of support have helped enormously, thank you.
Best regards
Terry
Best regards
Terry
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