After 51 days in St Louis the time has come for us to say goodbye. Looking back there has certainly been a range of emotions and times where I thought ‘ What have I done’. We started this journey in the summer and returning to the UK in the autumn, to think we have gone into another season seems crazy.
What I will miss is being able to talk to other SDR parents especially those who have children of a similar age to Dana. That’s where Facebook comes in very handy, chatting with parents and chatting with the therapists/doctors. What did we do before facebook? I shall also miss the security of the therapists, having the daily contact whereby you can ask anything and will be dealt with at that time not weeks later. As an example Dana has had her splints altered 5 times now, each time orthotics corrected the problem either before therapy or during therapy. There are no wasted days waiting for action, the splints were corrected and the physio session continued. Seamless.
Although it’s our last day, we do have PT at 10am with Mike. Following yesterdays limited physio session because of a blister, which looks much better today; hopefully we can get a more productive session. It feels very sad leaving as the security of the therapists is just what I need, or so I think. Dana walks as usual now to the 4th floor even though she says the blister is sore and Darlene greets us. I have a gift of chocolates for her as she has been so friendly and kind to us and will miss her. Darlene then presents me with a box of biscuits as a parting gift. Was not expecting that - so thoughtful.
Blaire is out first collecting her patient, and I sneak in to give her a thank you gift that she opens and we say our goodbyes. Mike and Erica walk out to reception and I hand Erica a thank you gift, which is a pen. Erica has a habit of putting pens in her hair, strange habit. She is after all Hollywood’s personal hair stylist and am going to miss those wonderful creations. We all walk into therapy chatting and Mike mentions he will be videoing Dana for her post op assessment. Really hope this gives a true picture of all the hard work she has put in and the blister will not hold her back. Mike instructs Dana what to do and she follows well. On the treadmill (which has became her best friend, can’t wait for ours to be delivered back home) Mike increases the speed to the maximum Dana can tolerate which is 1.3 and then reduces it down for side and backward walking. After the videoing Dana goes on the biotech machine that tests the strength in each leg, and does really well. She finishes the session with a ride on the bike with weights attached of course, too easy otherwise. While Dana is away I am advised Dr Dobbs is able to see us at lunchtime, which is great as I have a few questions regarding her progress following surgery that are troubling me. Dana arrives back on the bike with Mike as our session is finished. I gave Mike some chocolates as a thank you as I had already bought some very colorful socks, which suited him so well and was wearing them today. We said our goodbyes, hugs all round and left for the very last time. On the way out I gave Darlene a big hug and said will miss her.
We had time to eat some lunch before seeing Dr Dobbs and again for the last time sat in the cafeteria.
The meeting with Dr Dobbs was reassuring and laid my questions to rest. He also said Dana is at the level he would expect her to be, which for me was a great relief. Dr Dobbs agreed he will review Dana when we return next year for our review with Dr Park. So that was it, orthopedics are happy with Dana, the therapists are happy and with all the paperwork in my hand including the PT post op evaluation we call for the hotels shuttle bus, again for the last time.
Back at the hotel the only thing on the agenda for Dana and I this afternoon is packing and clearing the apartment. I bag up the cupboard food for the remaining families who may want any and bag some toys, which the younger children can use and then pass on to other children when they leave.
Later in the evening we have a farewell takeaway and drinks with nearly all the remaining families at the hotel which is a lovely evening.
Sadly this part of the journey is complete, we done what we set out to do and what an achievement. Dana’s life changed on the 4th August and this date will always be special, another birthday for Dana. The months ahead will be hard, there is no denying, yet all achievable as her future is worth every second.
Our thanks to the generosity of the people in the UK who came together and made this journey possible. To all the SDR families for your support in the good times and the bad. Each family is so incredible and each has their own stories to tell and are all united in making a difference for their children. Finally not least to Dr Park and team, Dr Dobbs and team, all the therapists and everyone who was part in Dana achieving what she has to date. You are all very special and will never be forgotten, we both have great lasting memories.
Monday, 19 September 2011
Thursday, 15 September 2011
Hollywood the Superstar
We are in our last week and it’s incredible to believe we have been in the USA just less than 2 months. Thinking back to day 1 seems such a long time ago and the time here has been something quite unique, I hope the blog and postings have given an insight to Dana’s journey.
We started the week’s physio with Mike, who is back after a weeks holiday, so makes for an interested physio session. I had given Mike an update on the weekend and how Dana had been practicing sitting on the swiss ball for balance and also focusing on stretching her back. Mike had a real treat for Dana after she boasted she had taken 3 independent steps at the hotel over the week end, so basically said ‘Great, I want you to walk for me’. To say Dana was shocked was an understatement, ‘you want me to walk’? Dana said. ‘Sure’ you told me you walked three steps’ . For those of you reading this blog who know Dana, she is a girl who visualizes herself doing things before actually mastering it properly, so in her mind the three steps converts to I can walk now. So I was thinking ok this is where it’s going to go horribly wrong and we are going to the ER. Dana stands and Mike is infront of her, she takes a step then hesitates, then take another and loses balance, gets into a panic, Mike calms and reassures her. Dana starts again takes a couple of steps and falls. ’Hollywood’ shouts Blaire, yes Hollywood is down and Mike scratches his head as he waits for Dana to get up. He’s got a long wait, I think to myself and eventually helps her up. So again Dana stands, Mike is in front, and off she goes, 15 independent steps on her own. She needs time to warm up. This is amazing progress. The quality was poor, as the knees and back again let her down. The balance is coming though and the confidence Dana is developing is way above my expectations. Better still she does 10 minutes on the treadmill at 1.0 & .09 non stop. She was dripping with sweat, bless her, this was a real workout and boy did Mike push her.
As a mum I know I let my fears and anxieties shadow and Monday proved how single minded Dana is and she can see herself achieving so much more. She doesn’t need any NLP techniques here. I know things back home will change as I have changed my mindset. I just have to encourage those around Dana to adopt the same approach. As things were in therapy in the UK pre SDR will not work now for Dana. The approach is too slow and the frequency not close enough. We as parents are Dana’s physio’s first and we have the tools to work with Dana. We will work with those around us and hope those around us will work with us. Only time will tell.
Tuesday’s physio with Erica was even better, 1.0 for 10 minutes with an incline for the last 30 seconds and hardly sweating. Dana also walked with her crutches as my goal is for Dana to walk into the plane with crutches. She did ok, again Dana takes a while to warm up and eventually gets a really nice rhythm going with stepping. We continue walking with crutches back at the hotel as part of her homework and go downstairs for dinner and a social evening with crutches. We sit with other families and chat but I feel distant, maybe I am just so tired. My body is tired and my mind is also. It’s always thinking and worrying, or planning when to do the physio homework. Right now I could do with a holiday or a spa for a night. That would be so nice. Bring myself back to now and listening to other families, we all have our worries but our minds are relaxed by celebrating a set of twins 4th birthday, which was so lovely. Such beautiful and well-mannered girls.
Wednesday I decide not to take the wheelchair to the hospital with us. It just felt right not to use it. Dana has school at 1pm and physio with Erica at 4pm. We make our way to the hotel lobby and wait for the shuttle bus. It’s pouring with rain and doesn’t stop all day. Dana has her rain mac on and needs to use the walker outside, so this will be good practice. I still take the crutches and feel so free not pushing the wheelchair. Dana and I chat as she walks along side me and it feels so right, so normal. We arrive at the hospital and John greets us and is pleased I have no wheelchair and gives his usual encouraging words. So does Diane who is the teacher in the school hospital, her face and words are so pleasing and encourages Dana to choose where she would like to sit. After an hour and a half of school, which is on the 8th floor, we head towards the cafeteria on the lower ground floor. Dana’s still going strong and walking proud. It’s time for physio and head to the 4th floor. How will Dana cope with an hour of intense physio after walking all day? Well only time will tell. Dana sits in reception after Doreen greets us both and has a well deserved rest. Erica collects us and we see Mike in the corridor. I say to Mike and Erica ‘ Look no wheelchair’ and gives us a high five. The first item on the agenda today is the treadmill and beating yesterdays time. Erica suggests walking for 11 minutes with an incline. Dana did the 11 minutes and with 5 minutes on a 0.4 incline. At one point she shouted ‘stop my muscles are tingling and feel itchy’ That’s normal Dana keep going. Next on the agenda was walking with crutches on her own, all 250 feet, now that’s a WOW. Lastly she wanted to ride the bike. I said that’s too easy and Erica put weights on the back of the bike. Now that’s a workout.
Dana did amazing today and the last few days, far exceeding what I expected. Her stamina has improved and today she walked where I walked and did far more activity than me. Her pace of walking is the same as mine, even quicker in some cases and the stepping is heel to toe. Today was a major breakthrough for me, allowing Dana the opportunity to walk and not putting my anxieties first. How do I know what Dana is able to achieve if I do not allow her the opportunity. Isn’t this what we are here for? What a feeling of freedom not to have the wheelchair. Finally Dana can develop and become the person she deserves to be.
Tomorrow Thursday Dana is 6 weeks post SDR and will have the final post video assessment. Really excited to see how much improvement has been made and develop a training programme for home.
We started the week’s physio with Mike, who is back after a weeks holiday, so makes for an interested physio session. I had given Mike an update on the weekend and how Dana had been practicing sitting on the swiss ball for balance and also focusing on stretching her back. Mike had a real treat for Dana after she boasted she had taken 3 independent steps at the hotel over the week end, so basically said ‘Great, I want you to walk for me’. To say Dana was shocked was an understatement, ‘you want me to walk’? Dana said. ‘Sure’ you told me you walked three steps’ . For those of you reading this blog who know Dana, she is a girl who visualizes herself doing things before actually mastering it properly, so in her mind the three steps converts to I can walk now. So I was thinking ok this is where it’s going to go horribly wrong and we are going to the ER. Dana stands and Mike is infront of her, she takes a step then hesitates, then take another and loses balance, gets into a panic, Mike calms and reassures her. Dana starts again takes a couple of steps and falls. ’Hollywood’ shouts Blaire, yes Hollywood is down and Mike scratches his head as he waits for Dana to get up. He’s got a long wait, I think to myself and eventually helps her up. So again Dana stands, Mike is in front, and off she goes, 15 independent steps on her own. She needs time to warm up. This is amazing progress. The quality was poor, as the knees and back again let her down. The balance is coming though and the confidence Dana is developing is way above my expectations. Better still she does 10 minutes on the treadmill at 1.0 & .09 non stop. She was dripping with sweat, bless her, this was a real workout and boy did Mike push her.
As a mum I know I let my fears and anxieties shadow and Monday proved how single minded Dana is and she can see herself achieving so much more. She doesn’t need any NLP techniques here. I know things back home will change as I have changed my mindset. I just have to encourage those around Dana to adopt the same approach. As things were in therapy in the UK pre SDR will not work now for Dana. The approach is too slow and the frequency not close enough. We as parents are Dana’s physio’s first and we have the tools to work with Dana. We will work with those around us and hope those around us will work with us. Only time will tell.
Tuesday’s physio with Erica was even better, 1.0 for 10 minutes with an incline for the last 30 seconds and hardly sweating. Dana also walked with her crutches as my goal is for Dana to walk into the plane with crutches. She did ok, again Dana takes a while to warm up and eventually gets a really nice rhythm going with stepping. We continue walking with crutches back at the hotel as part of her homework and go downstairs for dinner and a social evening with crutches. We sit with other families and chat but I feel distant, maybe I am just so tired. My body is tired and my mind is also. It’s always thinking and worrying, or planning when to do the physio homework. Right now I could do with a holiday or a spa for a night. That would be so nice. Bring myself back to now and listening to other families, we all have our worries but our minds are relaxed by celebrating a set of twins 4th birthday, which was so lovely. Such beautiful and well-mannered girls.
Wednesday I decide not to take the wheelchair to the hospital with us. It just felt right not to use it. Dana has school at 1pm and physio with Erica at 4pm. We make our way to the hotel lobby and wait for the shuttle bus. It’s pouring with rain and doesn’t stop all day. Dana has her rain mac on and needs to use the walker outside, so this will be good practice. I still take the crutches and feel so free not pushing the wheelchair. Dana and I chat as she walks along side me and it feels so right, so normal. We arrive at the hospital and John greets us and is pleased I have no wheelchair and gives his usual encouraging words. So does Diane who is the teacher in the school hospital, her face and words are so pleasing and encourages Dana to choose where she would like to sit. After an hour and a half of school, which is on the 8th floor, we head towards the cafeteria on the lower ground floor. Dana’s still going strong and walking proud. It’s time for physio and head to the 4th floor. How will Dana cope with an hour of intense physio after walking all day? Well only time will tell. Dana sits in reception after Doreen greets us both and has a well deserved rest. Erica collects us and we see Mike in the corridor. I say to Mike and Erica ‘ Look no wheelchair’ and gives us a high five. The first item on the agenda today is the treadmill and beating yesterdays time. Erica suggests walking for 11 minutes with an incline. Dana did the 11 minutes and with 5 minutes on a 0.4 incline. At one point she shouted ‘stop my muscles are tingling and feel itchy’ That’s normal Dana keep going. Next on the agenda was walking with crutches on her own, all 250 feet, now that’s a WOW. Lastly she wanted to ride the bike. I said that’s too easy and Erica put weights on the back of the bike. Now that’s a workout.
Dana did amazing today and the last few days, far exceeding what I expected. Her stamina has improved and today she walked where I walked and did far more activity than me. Her pace of walking is the same as mine, even quicker in some cases and the stepping is heel to toe. Today was a major breakthrough for me, allowing Dana the opportunity to walk and not putting my anxieties first. How do I know what Dana is able to achieve if I do not allow her the opportunity. Isn’t this what we are here for? What a feeling of freedom not to have the wheelchair. Finally Dana can develop and become the person she deserves to be.
Tomorrow Thursday Dana is 6 weeks post SDR and will have the final post video assessment. Really excited to see how much improvement has been made and develop a training programme for home.
Tuesday, 13 September 2011
Saturday, 10 September 2011
Friday, 9 September 2011
My name is... Hollywood
Waking up this morning my mind quickly turns to the physio session later today with Blaire again. Clarity is what I need and to have a clear understanding of what the main concerns are and how to address them. Until then Dana’s goes through her usual routine and we go for breakfast, which this morning she says, wants to walk down in her walker. This is fine by me. She’s getting pretty quick now on the walker, ignoring the posture, and heads back to our room once we finish eating. After face-timing home, whereby get told, the boiler, the home PC and now the washing machine have all gone wrong, it’s time to go to Children’s as Dana has her second school lesson. I’m thinking it’s going to be an expensive week back home.
Again Dana walks downstairs in her walker and walks out of the hotel and gets in the shuttle bus, with some help. Once we arrive at Children’s she walks with her walker until we reach the lifts. She has done an incredible amount of walking and to make sure she doesn’t over do things before physio suggest she uses the wheelchair for a while. Reluctantly she agrees. The more she is able to do, the more she wants to do. Dana gets a personal sense of achievement, which is great and pushes herself even further. I keep looking at her knees and really wish she can straighten them. I will get ask again later; maybe there is something else I ought to be doing in order to help her.
Dana’s UK school has emailed over some worksheets for Dana to work on and it’s on Business Studies, which she is so excited about as it’s one of her new option subjects. I sit in the roof garden for the hour and start reading my book. I get distracted by a mum cuddling her baby, sitting on the rocking bench. The baby must be about 10 months old and has an IV in his arm with a splint. The mum is wearing a tee-shirt which reads ‘I have decided” I look at the words and smile, what do the words mean for this mum. The words for me are very clear and very appropriate at this time. I think to myself there are signs everywhere and we choose to take notice or not. Today I take notice of the tee-shirt.
After an hours lesson Dana leaves the room with a big smile and we head to therapy. As we come out of the lifts, Dana comes out of the wheelchair and uses her walker to walk into therapy. I place the leg wraps on her to encourage the knees to be kept apart when walking. She flies into therapy and reaches the physio area before Blaire. Blaire jokingly repeats ‘come on’ in her English accent which is so funny. Treadmill is first on the agenda and Dana is struggling with walking. She does walk for 16 mins and considering the amount of walking pre physio she had done already, it’s pretty good going. Dana has her usual groans that Blaire now has a nickname for her ‘Hollywood’ that gives you an idea of the kind of sessions Dana has. Her acting skills are superb.
Blaire and I have a good chat about my concerns and suggests assessing the cause of Dana’s knees pulling in. I talk through what Blaire is saying and understand the exercises which will focus on Dana’s needs specifically. The exercises aren’t new to me and have done them a hundred times before SDR, yet this time round it feels so different as it will have a direct impact on Dana’s future. Blaire has Dana kneeling with hands on the wall and attempts to extend each knee to the side, right then left side. Dana finds this incredibly hard, I find myself pushing with her. There is a lot of weakness and the left knee does not lift at all. Blaire talks through how to support Dana and where this exercise will target. It’s surprising though to find out this will affect from hip to upper body, targeting hips and lower body is something separate. The thought of Dana’s body having all the spasticity support her body all these years is so wrong. All the years of physio as parents thinking its helping your child yet physio is like the waves of the sea. You gentle do the exercises until the tide comes in and it’s back to square one. It’s awful to see Dana struggle and I know the tide will not come in, the exercises will become easier and she will become stronger. This is only short term in her whole life. Spasticity was for life and that in my eyes is far worse, it’s a crime.
Back at the hotel, Dana walks with her crutches and does well. After sitting for a while she stand up on her own and says look at me, then she takes two steps. The confidence is so mature and its so great to see. When she is complemented by the therapist for the good work, she replies ‘I know’ It so good to hear.
Again Dana walks downstairs in her walker and walks out of the hotel and gets in the shuttle bus, with some help. Once we arrive at Children’s she walks with her walker until we reach the lifts. She has done an incredible amount of walking and to make sure she doesn’t over do things before physio suggest she uses the wheelchair for a while. Reluctantly she agrees. The more she is able to do, the more she wants to do. Dana gets a personal sense of achievement, which is great and pushes herself even further. I keep looking at her knees and really wish she can straighten them. I will get ask again later; maybe there is something else I ought to be doing in order to help her.
Dana’s UK school has emailed over some worksheets for Dana to work on and it’s on Business Studies, which she is so excited about as it’s one of her new option subjects. I sit in the roof garden for the hour and start reading my book. I get distracted by a mum cuddling her baby, sitting on the rocking bench. The baby must be about 10 months old and has an IV in his arm with a splint. The mum is wearing a tee-shirt which reads ‘I have decided” I look at the words and smile, what do the words mean for this mum. The words for me are very clear and very appropriate at this time. I think to myself there are signs everywhere and we choose to take notice or not. Today I take notice of the tee-shirt.
After an hours lesson Dana leaves the room with a big smile and we head to therapy. As we come out of the lifts, Dana comes out of the wheelchair and uses her walker to walk into therapy. I place the leg wraps on her to encourage the knees to be kept apart when walking. She flies into therapy and reaches the physio area before Blaire. Blaire jokingly repeats ‘come on’ in her English accent which is so funny. Treadmill is first on the agenda and Dana is struggling with walking. She does walk for 16 mins and considering the amount of walking pre physio she had done already, it’s pretty good going. Dana has her usual groans that Blaire now has a nickname for her ‘Hollywood’ that gives you an idea of the kind of sessions Dana has. Her acting skills are superb.
Blaire and I have a good chat about my concerns and suggests assessing the cause of Dana’s knees pulling in. I talk through what Blaire is saying and understand the exercises which will focus on Dana’s needs specifically. The exercises aren’t new to me and have done them a hundred times before SDR, yet this time round it feels so different as it will have a direct impact on Dana’s future. Blaire has Dana kneeling with hands on the wall and attempts to extend each knee to the side, right then left side. Dana finds this incredibly hard, I find myself pushing with her. There is a lot of weakness and the left knee does not lift at all. Blaire talks through how to support Dana and where this exercise will target. It’s surprising though to find out this will affect from hip to upper body, targeting hips and lower body is something separate. The thought of Dana’s body having all the spasticity support her body all these years is so wrong. All the years of physio as parents thinking its helping your child yet physio is like the waves of the sea. You gentle do the exercises until the tide comes in and it’s back to square one. It’s awful to see Dana struggle and I know the tide will not come in, the exercises will become easier and she will become stronger. This is only short term in her whole life. Spasticity was for life and that in my eyes is far worse, it’s a crime.
Back at the hotel, Dana walks with her crutches and does well. After sitting for a while she stand up on her own and says look at me, then she takes two steps. The confidence is so mature and its so great to see. When she is complemented by the therapist for the good work, she replies ‘I know’ It so good to hear.
Thursday, 8 September 2011
More question than answers……
It’s Wednesday morning and the sun is shinning. Dana again wakes at her usual time of 8am, she loves watching Friends in the evenings and ends up going to sleep at 10pm. This will change once we get back home. Back to a more reasonable bedtime. For now though it’s ok. I do the usual stretches before going down to breakfast and by the time we leave the apartment, we only have a few minutes left until breakfast is closed, so Dana is wheeled in her chair. Although she actually is just as quick in her walker, old habits die hard I guess.
After breakfast we speak to home as Ollie is back from his first day of Year 1 He looks so cute in his new uniform and his first tooth has fallen out. The time difference is still hard to get used to as when we are in the middle of our afternoon, home is in bed, so are only able to communicate during set times during the day.
Dana has her first schoolroom lesson this afternoon at the hospital so we make our way to Children’s for lunch. We will eat in the cafeteria, as it’s easier and convenient. I have Dana’s walker and sticks to carry and it’s quite an ordeal each day brining them to the hospital and on the shuttle bus. While we are eating a family from the hotel arrive and join Dana and I for lunch. They have been to the science center, which is such an inspiring and educational place for children and adults, I have never seen anything like it. We discuss the body works which is located in the science center and it is just that, and exhibit of how the body works. There are live size figures of men and women either figure skating or playing ball which shows the muscles used. We were able to explain to Dana about her operations, how Dr Park performed the spinal surgery and how Dr Dobbs performed the Hamstring Lengthening/ Heel Cord Release. She wasn’t impressed and I think would rather not have known.
While Dana is in her lesson, I take the opportunity to sit in the roof garden and read my book. I sit on a wooden bench and just look around to see the children in their hospital gowns with their mums enjoying the sunshine and the colorfulness of the flowers. I feel sad for them and think back to when Dana was an in-patient and the experience she has been through. It feels safe here and does not feel like a hospital. People are walking into the garden and each person has a sticker that states parent, grandparent, sibling or guest and the floor number of the patient. As I look, I recognize where their children are, some are in Intensive Care, others are on the wards.
With the lesson finished we head towards the therapy department for our 3pm appointment with Blaire. Dana walks into therapy as usual and we meet other families who we are friendly with and chat. Each parent has a look of desperation, desperate for his or her child to walk. As you focus on their faces, they are looking at their children eager for them to do well in physio, eager for an improvement on the previous day. I am no different and as we walk in with Blaire I am hoping this session will be even better then the last.
Blaire starts Dana on the treadmill; she completes 15 minutes today at a speed of 0.7. Her stamina is definitely improving considering she had also walked to therapy before physio. What is becoming clear and also raising some more questions is my concern over her knees still coming together and her posture. Blaire talks through the weakness in her hips cause the knees to go in. Frustration is the only word for it as I know there is no quick fix and the way Dana is walking is making it more difficult for her. More stretches and more strengthening. Blaire moves to asking about the sticks and wants to see her using these more. Again the posture and knees are awful and concerns are Dana using the sticks will affect her posture. What do I focus on? I look at Blaire and can see I’m upset and confused. She talks through the benefits of the sticks over the walker and explains Dana will require a physio session at home at least once a week to just focus on her back in addition to the normal back exercises incorporated with her stretches.
I leave the session upset and confused. I see other children progressing and feel so upset that the level of progress made is much more noticeable than Dana’s. I feel angry again Dana is the age she is. Dana has the willingness to want to achieve, which is something I am grateful for. She is strong and determined yet I feel for her that her body is not reacting at the same level. I’m not giving up, I know this is a long road. I am not new to working with Dana and doing the exercises needed, it’s been 13 years, yet now it feels so very different and I don’t know why. I will get more clarity when we are back at physio and hopefully will give me a bit more reassurance. I log on to facebook and can’t face reading the stories of children’s progress. I am happy for them of course but cry inside for Dana. I don’t want to post anything, as I know what the replies will be. Everyone is supportive but I just want clarity and answers to so many questions, which I know will be very hard to do.
After breakfast we speak to home as Ollie is back from his first day of Year 1 He looks so cute in his new uniform and his first tooth has fallen out. The time difference is still hard to get used to as when we are in the middle of our afternoon, home is in bed, so are only able to communicate during set times during the day.
Dana has her first schoolroom lesson this afternoon at the hospital so we make our way to Children’s for lunch. We will eat in the cafeteria, as it’s easier and convenient. I have Dana’s walker and sticks to carry and it’s quite an ordeal each day brining them to the hospital and on the shuttle bus. While we are eating a family from the hotel arrive and join Dana and I for lunch. They have been to the science center, which is such an inspiring and educational place for children and adults, I have never seen anything like it. We discuss the body works which is located in the science center and it is just that, and exhibit of how the body works. There are live size figures of men and women either figure skating or playing ball which shows the muscles used. We were able to explain to Dana about her operations, how Dr Park performed the spinal surgery and how Dr Dobbs performed the Hamstring Lengthening/ Heel Cord Release. She wasn’t impressed and I think would rather not have known.
While Dana is in her lesson, I take the opportunity to sit in the roof garden and read my book. I sit on a wooden bench and just look around to see the children in their hospital gowns with their mums enjoying the sunshine and the colorfulness of the flowers. I feel sad for them and think back to when Dana was an in-patient and the experience she has been through. It feels safe here and does not feel like a hospital. People are walking into the garden and each person has a sticker that states parent, grandparent, sibling or guest and the floor number of the patient. As I look, I recognize where their children are, some are in Intensive Care, others are on the wards.
With the lesson finished we head towards the therapy department for our 3pm appointment with Blaire. Dana walks into therapy as usual and we meet other families who we are friendly with and chat. Each parent has a look of desperation, desperate for his or her child to walk. As you focus on their faces, they are looking at their children eager for them to do well in physio, eager for an improvement on the previous day. I am no different and as we walk in with Blaire I am hoping this session will be even better then the last.
Blaire starts Dana on the treadmill; she completes 15 minutes today at a speed of 0.7. Her stamina is definitely improving considering she had also walked to therapy before physio. What is becoming clear and also raising some more questions is my concern over her knees still coming together and her posture. Blaire talks through the weakness in her hips cause the knees to go in. Frustration is the only word for it as I know there is no quick fix and the way Dana is walking is making it more difficult for her. More stretches and more strengthening. Blaire moves to asking about the sticks and wants to see her using these more. Again the posture and knees are awful and concerns are Dana using the sticks will affect her posture. What do I focus on? I look at Blaire and can see I’m upset and confused. She talks through the benefits of the sticks over the walker and explains Dana will require a physio session at home at least once a week to just focus on her back in addition to the normal back exercises incorporated with her stretches.
I leave the session upset and confused. I see other children progressing and feel so upset that the level of progress made is much more noticeable than Dana’s. I feel angry again Dana is the age she is. Dana has the willingness to want to achieve, which is something I am grateful for. She is strong and determined yet I feel for her that her body is not reacting at the same level. I’m not giving up, I know this is a long road. I am not new to working with Dana and doing the exercises needed, it’s been 13 years, yet now it feels so very different and I don’t know why. I will get more clarity when we are back at physio and hopefully will give me a bit more reassurance. I log on to facebook and can’t face reading the stories of children’s progress. I am happy for them of course but cry inside for Dana. I don’t want to post anything, as I know what the replies will be. Everyone is supportive but I just want clarity and answers to so many questions, which I know will be very hard to do.
Wednesday, 7 September 2011
Just the two of us……
The weekend was long with a Bank Holiday on Monday and Dana and I are left on our own. Sunday was so lonely, although there are families here and are friendly, it’s not the same as talking to someone who knows you. Dana spent most of the day crying and I spent most of the day consoling her or attempting to incorporate a routine such as doing her exercises. The car had also gone back on the Saturday so it was back to using the shuttle bus. I managed to cook a roast dinner on the Sunday evening which much to Dana’s surprise she enjoyed. Monday night we got a takeaway and ordered a pizza from a yummy independent pizza company. We both sat in the lobby reception area and ate pizza while watching Friends on TV, which is Dana’s favorite show. I needed to be around people and couldn’t stand being in the apartment anymore. While we were eating an American man approached us and congratulated Dana on how well she was progressing and we had a brief chat. What a lovely and friendly man he was and told me he had been staying at the hotel while his house was being rebuilt. He and his wife had been at the hotel for 2 months and had a further 2 months to go. Their kids had put the washing machine on and not noticed the water overflowing for 4 days. The house was ruined. I felt so sorry for him yet instantly felt better. Strangers are so friendly, only if you let them in. Someone once told me I do not let people in, maybe they have a point. The same man later returned and had a very large watermelon, which he presented to Dana. Unfortunately Dana dislikes this type of melon and declined. We both felt uplifted as we walked back to our room, I still couldn’t wait for Tuesday though.
After the usual morning exercise’s we make our way to breakfast and see the American man and his wife. We have a brief chat and wish them a good time in the Bahamas as they fly today for a week. I think to myself Dana and I will still be here when they return. What I wouldn’t give for a week in the Caribbean. Still there is lots of work to be done and my mind comes back to the day ahead as physio today is at 2pm with Erica, who has just returned from a break in Mexico. You get to know people here pretty well in such a short time, it feels as if you have known them for years. There is an unexpected twist this morning, the temperature has fallen so much it feels more like the UK. How can it be 105 last week and this morning it was 56, even the locals say it is freezing and have hoodies and coats on.
Dana looks and feels much better this morning and tells me she will do her best today in physio. I know she will, she always does, even if she pulls funny faces and moans. I gather the laundry and bag two loads of washing that is washed and hang before we go out. We plan to have lunch out which will make the afternoon longer and after Dana finishes her much loved chicken noodle soup and I have a sandwich with coffee, we walk back to the children’s hospital. John, the cheery security guard, welcomes us back and we chat for a while. We then go to the 8th floor to the roof garden as it’s turned into a beautiful sunny day and we have a while before physio. As we walk out of the lift we are faced with the schoolroom. This prompts me to walk in and talk through some lessons for Dana either before or after therapy during these next few weeks. The staff in the schoolroom are all qualified teachers and are so helpful and flexible, they will work with Dana on any subject she wants. I mention Math is her weakness and suggest starting with this subject. They agree and also suggest if Dana’s current school is able to email some worksheets, they are more than happy to work with Dana during the hourly lessons. If not, then they will work on the areas that Dana most needs. So within a few minutes 3 sessions are booked for this week. Dana will have a different focus to concentrate on. Feeling a sense of achievement we head to the roof garden and sit down on one of the many wooden benches. It so wonderful here, the flowers are so colourful they attract so many butterflies, it’s a joy to watch. There is a water feature which has a large rotating ball with a map of the world etched. The children touch the ball as it rotates. It’s such a happy and positive place, perfect for children who are recovering. You’d be forgiven in thinking this was somewhere else other than a hospital. A family from Scotland join us in the garden and we chat for a while until it’s time for our appointment.
Dana and I head to the 4th floor and greeted by Darlene on reception ‘Hello Mrs Johnston, hello Dana, how are you today’ It’s still amazes me the personal touch every time I walk into the therapy department. I open Dana’s walker while Dana makes her way out of her wheelchair and positions herself with the walker. Within seconds starts to walk along the corridor just at the point whereby Dr Park enters the department. ‘Good Work Dana’ he says and we talk through Dana’s gait. ‘Keep up the stretches, more stretching’ He observes and pats Dana on the shoulder for encouragement. How lovely and sincere Dr Park is. To spend time with Dana and I when he is an incredibly busy man. Dr Park is a true professional and a gentleman. As Dr Park disappears Dana continues to walk through the department into the therapy area and Erica appears with a rather squinty eye. One of her contacts is giving her trouble, so she is looking at me sideways and squinting. Should be an interesting physio session.
It was an amazing physio session, Dana walked for 12 minutes at a speed of 0.6 on the treadmill. We did have moaning and pulling funny faces from Dana yet she did it non-stop. The remaining time Dana focused on high kneeling and weight transferring, this was tough and a lots of work needs to be done to build up strength. It will come over time. As the session was ending Dana walked to the exit increasing her distance. This is real progress and decreases time spent in the wheelchair.
As we go toward the exit of the hospital there are several families with wheelchairs waiting for the shuttle. Dana and I will wait for another shuttle as we are last in the queue. The driver says we can all fit, so with a little help by everyone for everyone, I don’t know how we did it but we all get in. There were six adults, five children, three wheelchairs, three walkers and a pair of sticks. We all worked together and helped each other, it felt so comforting.
Tomorrow is Wednesday and 10 days until we return to the UK. It seems such a mountain to climb and not sure now what stage Dana will be at on our last day here. I do know the wheelchair is becoming less used and the walker is being used more in all environments. Dana seems to have lost her fear and makes opportunities happen. She will stand up on her own and do things that she would not even attempt before SDR.
After the usual morning exercise’s we make our way to breakfast and see the American man and his wife. We have a brief chat and wish them a good time in the Bahamas as they fly today for a week. I think to myself Dana and I will still be here when they return. What I wouldn’t give for a week in the Caribbean. Still there is lots of work to be done and my mind comes back to the day ahead as physio today is at 2pm with Erica, who has just returned from a break in Mexico. You get to know people here pretty well in such a short time, it feels as if you have known them for years. There is an unexpected twist this morning, the temperature has fallen so much it feels more like the UK. How can it be 105 last week and this morning it was 56, even the locals say it is freezing and have hoodies and coats on.
Dana looks and feels much better this morning and tells me she will do her best today in physio. I know she will, she always does, even if she pulls funny faces and moans. I gather the laundry and bag two loads of washing that is washed and hang before we go out. We plan to have lunch out which will make the afternoon longer and after Dana finishes her much loved chicken noodle soup and I have a sandwich with coffee, we walk back to the children’s hospital. John, the cheery security guard, welcomes us back and we chat for a while. We then go to the 8th floor to the roof garden as it’s turned into a beautiful sunny day and we have a while before physio. As we walk out of the lift we are faced with the schoolroom. This prompts me to walk in and talk through some lessons for Dana either before or after therapy during these next few weeks. The staff in the schoolroom are all qualified teachers and are so helpful and flexible, they will work with Dana on any subject she wants. I mention Math is her weakness and suggest starting with this subject. They agree and also suggest if Dana’s current school is able to email some worksheets, they are more than happy to work with Dana during the hourly lessons. If not, then they will work on the areas that Dana most needs. So within a few minutes 3 sessions are booked for this week. Dana will have a different focus to concentrate on. Feeling a sense of achievement we head to the roof garden and sit down on one of the many wooden benches. It so wonderful here, the flowers are so colourful they attract so many butterflies, it’s a joy to watch. There is a water feature which has a large rotating ball with a map of the world etched. The children touch the ball as it rotates. It’s such a happy and positive place, perfect for children who are recovering. You’d be forgiven in thinking this was somewhere else other than a hospital. A family from Scotland join us in the garden and we chat for a while until it’s time for our appointment.
Dana and I head to the 4th floor and greeted by Darlene on reception ‘Hello Mrs Johnston, hello Dana, how are you today’ It’s still amazes me the personal touch every time I walk into the therapy department. I open Dana’s walker while Dana makes her way out of her wheelchair and positions herself with the walker. Within seconds starts to walk along the corridor just at the point whereby Dr Park enters the department. ‘Good Work Dana’ he says and we talk through Dana’s gait. ‘Keep up the stretches, more stretching’ He observes and pats Dana on the shoulder for encouragement. How lovely and sincere Dr Park is. To spend time with Dana and I when he is an incredibly busy man. Dr Park is a true professional and a gentleman. As Dr Park disappears Dana continues to walk through the department into the therapy area and Erica appears with a rather squinty eye. One of her contacts is giving her trouble, so she is looking at me sideways and squinting. Should be an interesting physio session.
It was an amazing physio session, Dana walked for 12 minutes at a speed of 0.6 on the treadmill. We did have moaning and pulling funny faces from Dana yet she did it non-stop. The remaining time Dana focused on high kneeling and weight transferring, this was tough and a lots of work needs to be done to build up strength. It will come over time. As the session was ending Dana walked to the exit increasing her distance. This is real progress and decreases time spent in the wheelchair.
As we go toward the exit of the hospital there are several families with wheelchairs waiting for the shuttle. Dana and I will wait for another shuttle as we are last in the queue. The driver says we can all fit, so with a little help by everyone for everyone, I don’t know how we did it but we all get in. There were six adults, five children, three wheelchairs, three walkers and a pair of sticks. We all worked together and helped each other, it felt so comforting.
Tomorrow is Wednesday and 10 days until we return to the UK. It seems such a mountain to climb and not sure now what stage Dana will be at on our last day here. I do know the wheelchair is becoming less used and the walker is being used more in all environments. Dana seems to have lost her fear and makes opportunities happen. She will stand up on her own and do things that she would not even attempt before SDR.
Sunday, 4 September 2011
Friday, 2 September 2011
Finding a balance
It’s just after 9pm in the US, which is just after 3am on Friday morning in the UK and I am reflecting on the day as I write the blog. It’s the first time I sit down and relax after putting Oliver and Dana to bed.
Last thing at night and first thing in the morning Dana has a routine that must be followed, a certain code of conduct. During this routine we follow the protocol of stretches, each repetitive, each as important as each other. There are no adaptations other than additional ones, which the physio’s may suggest for us to incorporate. This is part of Dana’s life now and a change that forms part of daily life. At night Dana also wears night splints and knee immobilizers on both legs that keeps her legs straight throughout the night. These have became her ‘friends’ as she calls them as she said they protect her orthopedic incisions. Last night she screams in pain saying her left immobilizer was digging into her ankle, so at 2am I take it off.
After an unsettled night for Dana and I, we manage to lie in until 8 before we start the morning with the mandatory stretches. I look at the strips still on her legs covering the incisions and desperately cover them with hot water in an attempt they will fall off. Dana will not allow me to take these off, and for someone who has gone through the ordeal of these last few weeks,, the removable of the strips is bigger than the ops. So the strips survive another shower, maybe tomorrow they will fall off themselves.
Physio is later in the afternoon and we arrive in reception of the physio department as usual and await Blaires arrival. I get Dana to stand on her walker and start walking to the therapy room as sitting in the wheelchair is not useful. As Dana starts walking we meets other families who have just finished physio and chat along the way. We also see Mike who is wearing a London Underground Tee-Shirt and we point out where our nearest tube station is. Blaire soon arrives and comments how well Dana looks and congratulates her in attempting to walk with her walker. She instructs Dana to head towards the same treadmill as she used yesterday. What will today bring and can Dana rise to the challenge?
Dana is already out of breath and Blaire sits her down while she gets a bike to start of the session. This is Dana’s warm up as she heads out of the 4th floor and goes to 2nd floor and loops round. Dana peddles the bike most of the way. This is such an improvement and really shows how much stronger her legs are becoming. We arrive back in the therapy room and Blaire does some additional stretching on Dana. Blaire raises concerns over her hips and we confirm the hip x-ray show no abnormalities. Dana’s hips are so very tight and need a lot of work. Please don’t give me something else to worry about, I’m sure it is tightness and with a lot of hard work this will became better. Blaire then gets Dana walking with crutches, we have left hers at the hotel and borrow some. Dana feels really unsure about these as she attempts to take steps. Blaire is supporting Dana quite heavily and talks through how she has to move which Dana follows closely. Dana is so red faced and exhausted, I know she has really pushed herself again 100% and has raised her achievements yet again. Blaire sets Dana some homework for later and demonstrates what she has to do. Side stepping ensuring her knee is turned out and also forward stepping. We head to the ice cream stand in the cafeteria for a well earned ice cream.
After arriving at the hotel Dana rests for a while and while dinner is cooking we start on the homework Blaire has set. We attempt side stepping on and off a step which proves too difficult and quickly replace the step with the yellow pages. Dana attempt 20 stepping on each leg with again a lot of support. We sit Dana on a chair and really focus on getting the knee out when she lifts the leg, this seems better and Dana completes another 20 on each side. We head towards the stairs and focus on forward stepping on and off the step. Dana starts shouting I can’t do this. She is tired yet I encourage her to continue. Nothing I say calms her down and she gets into a moody and stroppy attitude. That’s it, I am not continuing and place her back in the wheelchair and head back to the room. Again similar to yesterday it’s knowing when to stop, yet at the same time I felt so frustrated she didn’t just do it. That’s the thing, Dana can’t just do it and I know she feels frustrated her legs are not doing what she wants them to do. After half an hour of tears and a lot of shouting she can’t do anymore and wants to go home, Dana calms down once we acknowledge she is giving 100% and we know she is doing the best she can. Dana feels it is always about exercises or physio and we both repeat the importance of why we do the amount we do each day.
The key is balance and making it fun. Something I clearly still have to work on.
Last thing at night and first thing in the morning Dana has a routine that must be followed, a certain code of conduct. During this routine we follow the protocol of stretches, each repetitive, each as important as each other. There are no adaptations other than additional ones, which the physio’s may suggest for us to incorporate. This is part of Dana’s life now and a change that forms part of daily life. At night Dana also wears night splints and knee immobilizers on both legs that keeps her legs straight throughout the night. These have became her ‘friends’ as she calls them as she said they protect her orthopedic incisions. Last night she screams in pain saying her left immobilizer was digging into her ankle, so at 2am I take it off.
After an unsettled night for Dana and I, we manage to lie in until 8 before we start the morning with the mandatory stretches. I look at the strips still on her legs covering the incisions and desperately cover them with hot water in an attempt they will fall off. Dana will not allow me to take these off, and for someone who has gone through the ordeal of these last few weeks,, the removable of the strips is bigger than the ops. So the strips survive another shower, maybe tomorrow they will fall off themselves.
Physio is later in the afternoon and we arrive in reception of the physio department as usual and await Blaires arrival. I get Dana to stand on her walker and start walking to the therapy room as sitting in the wheelchair is not useful. As Dana starts walking we meets other families who have just finished physio and chat along the way. We also see Mike who is wearing a London Underground Tee-Shirt and we point out where our nearest tube station is. Blaire soon arrives and comments how well Dana looks and congratulates her in attempting to walk with her walker. She instructs Dana to head towards the same treadmill as she used yesterday. What will today bring and can Dana rise to the challenge?
Dana is already out of breath and Blaire sits her down while she gets a bike to start of the session. This is Dana’s warm up as she heads out of the 4th floor and goes to 2nd floor and loops round. Dana peddles the bike most of the way. This is such an improvement and really shows how much stronger her legs are becoming. We arrive back in the therapy room and Blaire does some additional stretching on Dana. Blaire raises concerns over her hips and we confirm the hip x-ray show no abnormalities. Dana’s hips are so very tight and need a lot of work. Please don’t give me something else to worry about, I’m sure it is tightness and with a lot of hard work this will became better. Blaire then gets Dana walking with crutches, we have left hers at the hotel and borrow some. Dana feels really unsure about these as she attempts to take steps. Blaire is supporting Dana quite heavily and talks through how she has to move which Dana follows closely. Dana is so red faced and exhausted, I know she has really pushed herself again 100% and has raised her achievements yet again. Blaire sets Dana some homework for later and demonstrates what she has to do. Side stepping ensuring her knee is turned out and also forward stepping. We head to the ice cream stand in the cafeteria for a well earned ice cream.
After arriving at the hotel Dana rests for a while and while dinner is cooking we start on the homework Blaire has set. We attempt side stepping on and off a step which proves too difficult and quickly replace the step with the yellow pages. Dana attempt 20 stepping on each leg with again a lot of support. We sit Dana on a chair and really focus on getting the knee out when she lifts the leg, this seems better and Dana completes another 20 on each side. We head towards the stairs and focus on forward stepping on and off the step. Dana starts shouting I can’t do this. She is tired yet I encourage her to continue. Nothing I say calms her down and she gets into a moody and stroppy attitude. That’s it, I am not continuing and place her back in the wheelchair and head back to the room. Again similar to yesterday it’s knowing when to stop, yet at the same time I felt so frustrated she didn’t just do it. That’s the thing, Dana can’t just do it and I know she feels frustrated her legs are not doing what she wants them to do. After half an hour of tears and a lot of shouting she can’t do anymore and wants to go home, Dana calms down once we acknowledge she is giving 100% and we know she is doing the best she can. Dana feels it is always about exercises or physio and we both repeat the importance of why we do the amount we do each day.
The key is balance and making it fun. Something I clearly still have to work on.
Thursday, 1 September 2011
No More Exercises!
Our daily physio appointment loomed at 11 am. Today we had the delights of Mike and we knew that it promised to by a fun filled session. Mike was such an explosive person when it comes to personalities that you could not fail to be entwined fully in the moment of the session. Dana thought Mike was hilarious and many times we had to get her focused, as she tends to laugh so much.
We met with Mike as scheduled at 11am and he immediately got Dana up from her wheelchair onto her walker. She was up for the challenge and started to walk with her walker into the therapy room. It was a long walk from reception to the therapy rooms and at least over 100 foot. Dana was building her stamina slowly but this distance for her was still a challenge.
She rose well to this challenge and this was helped as Mike laughed and joked with her on route. She was soon out of breath and needed our help with the walker to get to her resting place before the session really began.
Mike was in good form today he announced Dana was going to work on the treadmill. Dana likes the treadmill, she never had the chance to use one before and I think she feels as though she is actually improving on it as she can measure her distance.
Mike looked at Dana with those mad eyes as he got her onto the treadmill belt; he announced she was going to walk for five minutes. Five minutes, was he completely bonkers? Dana thought so but off she went at 0.2 miles per hour, he soon increased the speed to 0.3. It does not sound much but to Dana its huge and she started to struggle to keep up.
‘Come on Dana’ Mike said with encouragement. Her legs started to seem to buckle and I was concerned. I got closer to the equipment and Dana but Dana soon regained her composure and started to keep up. I could see she was getting tired and I also shouted out by encouragement to Dana, ‘Go Dana, you can do this’. She responded to the encouragement and regained her momentum.
Five minutes came around and Mike stopped the machine and placed a chair where Dana could rest.
She slumped into the chair, worn out, virtually panting. Mike beamed his smile at Dana, ’Good Job Dana’ he expressed.
Mike turned to his notes and started to write vigorously, Dana just sat and did not move. A few minutes past and Mike turned his attention back to Dana, ‘Ok’ he said ‘Time for sidestepping”. Side stepping? I feared failure as Dana left leg is much weaker than her right and the cause of some functional issues.
Mike positioned Dana to her side and the machine was started, 0.1, 0.2. Dana started to side step but she found this difficult. I winched and could not look as Mike was virtually holding Dana and moving her legs. I could see an accident about to happen, but somehow it seemed to work. Dana struggled again but she persevered but kept asking Mike to turn the machine off. He didn’t listen and just carried on determined she would finish. Three minutes later and she had. Mike placed the chair again on the treadmill for Dana to sit down and rest. While he made some notes in Dana’s file.
‘ How are you feeling Dana’ Mike said ’Ok’ replied Dana, ‘Now we are going to side step with the other leg’ said Mike. Dana looked confused and said ‘How am I going to do that, are you going to turn the treadmill round’ Seriously I do wonder about Dana sometimes. ‘No’ Mike said laughing ‘there is a reverse button on the treadmill which I press and that makes the belt turn in reverse’ It took a while for Dana to think about what Mike said by which time Mike had got her up from the chair and positioned sideways on the treadmill. Mike was talking about what was going to happen when he started the treadmill; Dana had to move her feet sideways. Mike started the treadmill and Dana didn’t move, her legs were bending sideways as the treadmill was moving. Mike reacted quickly by talking with encouragement while helping her legs to move. Dana quickly managed to get a rhythm going but soon her legs started to buckle. She was dragging her feet and pleading Mike to stop. Mike kept up the encouragement but Dana kept pleading to stop. Although all you wanted to do was to press the stop button that would be easy. Dana could do this and Mike knew it that’s why he kept going. We all started to count down the seconds, 5,4,3,2,1 and Mike pressed stop. Dana did it, another 3 mins on the treadmill. Wow what an achievement. Dana was exhausted and sat once again on the chair Mike placed on the treadmill. Mike was so impressed at her determination, although she had pleaded to stop, she was pleased she didn’t. Dana was finished for the morning and looked at me with her tired eyes, pleading with me for no more work.
Mike finished the session by giving us some exercises for the afternoon and we exited the therapy area once again until tomorrow.
The afternoon we spent at our apartment. The weather was hot yet again and back up to 100 degrees. We had spent the last five days driving around to malls, tourist locations and I just wanted to chill a bit.
Late in the afternoon we decided to start the afternoon exercises, side stepping and outside leg raises with and without resistance. Dana got up to start the exercises but soon became tired. She seemed to me to be upset and fed up. I persisted with the exercises trying to get her to perform her best but she started to become angry and upset. Tears start to flow from Dana, lots of tears and lots of shouting, she is really upset. Does she not realize how important these exercise were to her, or was it me that should realize she’s been living this every day for the past month, whether exercises or being operated on, or recovering…maybe she had just had enough. I have if I’m honest and just wish for a day where I did not have to go to the hospital, or do exercises, but I know its so important to continue this, after all only by continuing can we really make a difference.
I sit her down and get some chocolate from the fridge and give it to her. She munches away and we strike a bargain to continue the exercises. We finish off the exercises and Dana lies down on her bed to relax watching TV. Tomorrow is an afternoon physio appointment, so Dana will have to do some exercises in addition to her usually stretches in the morning. I’ll approach this subject with caution in the morning.
We met with Mike as scheduled at 11am and he immediately got Dana up from her wheelchair onto her walker. She was up for the challenge and started to walk with her walker into the therapy room. It was a long walk from reception to the therapy rooms and at least over 100 foot. Dana was building her stamina slowly but this distance for her was still a challenge.
She rose well to this challenge and this was helped as Mike laughed and joked with her on route. She was soon out of breath and needed our help with the walker to get to her resting place before the session really began.
Mike was in good form today he announced Dana was going to work on the treadmill. Dana likes the treadmill, she never had the chance to use one before and I think she feels as though she is actually improving on it as she can measure her distance.
Mike looked at Dana with those mad eyes as he got her onto the treadmill belt; he announced she was going to walk for five minutes. Five minutes, was he completely bonkers? Dana thought so but off she went at 0.2 miles per hour, he soon increased the speed to 0.3. It does not sound much but to Dana its huge and she started to struggle to keep up.
‘Come on Dana’ Mike said with encouragement. Her legs started to seem to buckle and I was concerned. I got closer to the equipment and Dana but Dana soon regained her composure and started to keep up. I could see she was getting tired and I also shouted out by encouragement to Dana, ‘Go Dana, you can do this’. She responded to the encouragement and regained her momentum.
Five minutes came around and Mike stopped the machine and placed a chair where Dana could rest.
She slumped into the chair, worn out, virtually panting. Mike beamed his smile at Dana, ’Good Job Dana’ he expressed.
Mike turned to his notes and started to write vigorously, Dana just sat and did not move. A few minutes past and Mike turned his attention back to Dana, ‘Ok’ he said ‘Time for sidestepping”. Side stepping? I feared failure as Dana left leg is much weaker than her right and the cause of some functional issues.
Mike positioned Dana to her side and the machine was started, 0.1, 0.2. Dana started to side step but she found this difficult. I winched and could not look as Mike was virtually holding Dana and moving her legs. I could see an accident about to happen, but somehow it seemed to work. Dana struggled again but she persevered but kept asking Mike to turn the machine off. He didn’t listen and just carried on determined she would finish. Three minutes later and she had. Mike placed the chair again on the treadmill for Dana to sit down and rest. While he made some notes in Dana’s file.
‘ How are you feeling Dana’ Mike said ’Ok’ replied Dana, ‘Now we are going to side step with the other leg’ said Mike. Dana looked confused and said ‘How am I going to do that, are you going to turn the treadmill round’ Seriously I do wonder about Dana sometimes. ‘No’ Mike said laughing ‘there is a reverse button on the treadmill which I press and that makes the belt turn in reverse’ It took a while for Dana to think about what Mike said by which time Mike had got her up from the chair and positioned sideways on the treadmill. Mike was talking about what was going to happen when he started the treadmill; Dana had to move her feet sideways. Mike started the treadmill and Dana didn’t move, her legs were bending sideways as the treadmill was moving. Mike reacted quickly by talking with encouragement while helping her legs to move. Dana quickly managed to get a rhythm going but soon her legs started to buckle. She was dragging her feet and pleading Mike to stop. Mike kept up the encouragement but Dana kept pleading to stop. Although all you wanted to do was to press the stop button that would be easy. Dana could do this and Mike knew it that’s why he kept going. We all started to count down the seconds, 5,4,3,2,1 and Mike pressed stop. Dana did it, another 3 mins on the treadmill. Wow what an achievement. Dana was exhausted and sat once again on the chair Mike placed on the treadmill. Mike was so impressed at her determination, although she had pleaded to stop, she was pleased she didn’t. Dana was finished for the morning and looked at me with her tired eyes, pleading with me for no more work.
Mike finished the session by giving us some exercises for the afternoon and we exited the therapy area once again until tomorrow.
The afternoon we spent at our apartment. The weather was hot yet again and back up to 100 degrees. We had spent the last five days driving around to malls, tourist locations and I just wanted to chill a bit.
Late in the afternoon we decided to start the afternoon exercises, side stepping and outside leg raises with and without resistance. Dana got up to start the exercises but soon became tired. She seemed to me to be upset and fed up. I persisted with the exercises trying to get her to perform her best but she started to become angry and upset. Tears start to flow from Dana, lots of tears and lots of shouting, she is really upset. Does she not realize how important these exercise were to her, or was it me that should realize she’s been living this every day for the past month, whether exercises or being operated on, or recovering…maybe she had just had enough. I have if I’m honest and just wish for a day where I did not have to go to the hospital, or do exercises, but I know its so important to continue this, after all only by continuing can we really make a difference.
I sit her down and get some chocolate from the fridge and give it to her. She munches away and we strike a bargain to continue the exercises. We finish off the exercises and Dana lies down on her bed to relax watching TV. Tomorrow is an afternoon physio appointment, so Dana will have to do some exercises in addition to her usually stretches in the morning. I’ll approach this subject with caution in the morning.
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