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.
Wednesday, 31 August 2011
We are learning together
Today sees another 11am physio session with Blaire and I have asked the manager of the therapists to join Dana’s session this morning. My reasoning for this is to get a better understanding of where Dana should be by the time we leave. I’ve mentioned before as Dana is a lot older than the children currently here, I felt a more personalized therapy plan will help me develop a structure of achievable goals to work towards and also the therapists would be working in unity. Now we are almost at the end of the allotted 4 weeks of therapy, I wanted to have targets to work with and also know Dana is at the stage she should be.
During the session we discuss what I am looking for and quickly come to realize that the structured programme is not what is required and the therapist work on Dana and assess on a day by day basis. Although I feel uneasy about the approach, I do understand Dana’s body will alter and improve when it does and no amount of time can be allocated to this. Dana is much older than the other children here and her body has carried the spasticity for a lot more years than the other children. The improvements are, as we have seen much smaller and still rewarding. Yet I have a longing to see much much more, this will take months. I know I have to lower my expectation and focus on the smaller achievements not look out for the bigger ones and be disappointed. I got to remember Dana, who is working so incredibly hard, it hurts so much inside to see the grit and determination during therapy. She is not quite at 4 weeks post op yet; I just don’t want to let her down.
Mid way through the physio session Dana’s private UK physio, Kerry, via Skype, also joins us. What was interesting as I was introducing everyone and talking through what Dana has been through and what stage Dana is at currently, is just how far Dana has come. This in itself reaffirms for me Dana is progressing well and to not get worked up and focus on schedules and timelines. Not having schedules and timelines is very alien to me and I will have to adapt and look at this differently. After all Dana is changing her habits so I will do the same.
I hold my laptop like an amateur cameraman, adjusting the angle so Kerry has a good view of the therapy. Dana forces a smile now and again but mainly she is red faced and full of concentration. To have Kerry live at a US physio session is brilliant as very few UK physio will have experienced just a fraction of what the children go through and more importantly see the rehabilitation in action. Dana walks with her walker up and down the therapy room and walks forward and sideways on the treadmill for a few minutes. Her stamina is low, yet she achieves the best she can. We are all thrilled at Dana’s work today and as the session ends we say goodbye to Kerry and hopes to join us again at a future session. Blaire sets Dana homework for later and we say goodbye until tomorrow.
Having a car makes daily life here normal and sometimes you forget that home is actually the UK. For me the UK is not part of my mind and for Dana she is starting to miss home. When you grocery shop and cook nearly every night and it feels you are working all week, it certainly not a holiday. I am sure people will ask me if I had a nice holiday when I return to the UK. I will choose my words carefully when replying!! The experience is one I have never come across, yet there are parts that are similar to being in Budapest with Dana for months of therapy. Being alone and sharing that journey with other parents in the same situation as you. Going to the same building at a certain time daily. Grocery shopping and cooking.
We drive to outside St Louis as family life still continues, Ollie needs school shoes as he is back to school next Wednesday. My aim is also to buy Dana some school shoes. I enter a shop and start chatting with the shop assistant when a customer asks if I am from the UK. She is also English and has been living in the US for 6 years. We have a chat and when I ask her what part of the UK she is from, she replies Epsom, which is 20mins or so from where I live. She says she misses the UK desperately and wants to go back. We carry on chatting for a while and say goodbye. Everywhere you go people are so friendly and chatty.
We buy Ollie some school shoes, Dana however proves to be more difficult due to the splints. We decide for the few weeks she has left wearing the long splints she will wear her trainers and we will buy shoes for her ankle splints. Joy another shoe shopping trip.
Arriving back at the hotel early evening and after a short rest, I start on the homework with Dana. This involves 10 sets of 20 reps of sit to stand, weight transferring and side leg raises. At bed time it is the usual leg stretches, but that’s later and now it’s time for dinner.
During the session we discuss what I am looking for and quickly come to realize that the structured programme is not what is required and the therapist work on Dana and assess on a day by day basis. Although I feel uneasy about the approach, I do understand Dana’s body will alter and improve when it does and no amount of time can be allocated to this. Dana is much older than the other children here and her body has carried the spasticity for a lot more years than the other children. The improvements are, as we have seen much smaller and still rewarding. Yet I have a longing to see much much more, this will take months. I know I have to lower my expectation and focus on the smaller achievements not look out for the bigger ones and be disappointed. I got to remember Dana, who is working so incredibly hard, it hurts so much inside to see the grit and determination during therapy. She is not quite at 4 weeks post op yet; I just don’t want to let her down.
Mid way through the physio session Dana’s private UK physio, Kerry, via Skype, also joins us. What was interesting as I was introducing everyone and talking through what Dana has been through and what stage Dana is at currently, is just how far Dana has come. This in itself reaffirms for me Dana is progressing well and to not get worked up and focus on schedules and timelines. Not having schedules and timelines is very alien to me and I will have to adapt and look at this differently. After all Dana is changing her habits so I will do the same.
I hold my laptop like an amateur cameraman, adjusting the angle so Kerry has a good view of the therapy. Dana forces a smile now and again but mainly she is red faced and full of concentration. To have Kerry live at a US physio session is brilliant as very few UK physio will have experienced just a fraction of what the children go through and more importantly see the rehabilitation in action. Dana walks with her walker up and down the therapy room and walks forward and sideways on the treadmill for a few minutes. Her stamina is low, yet she achieves the best she can. We are all thrilled at Dana’s work today and as the session ends we say goodbye to Kerry and hopes to join us again at a future session. Blaire sets Dana homework for later and we say goodbye until tomorrow.
Having a car makes daily life here normal and sometimes you forget that home is actually the UK. For me the UK is not part of my mind and for Dana she is starting to miss home. When you grocery shop and cook nearly every night and it feels you are working all week, it certainly not a holiday. I am sure people will ask me if I had a nice holiday when I return to the UK. I will choose my words carefully when replying!! The experience is one I have never come across, yet there are parts that are similar to being in Budapest with Dana for months of therapy. Being alone and sharing that journey with other parents in the same situation as you. Going to the same building at a certain time daily. Grocery shopping and cooking.
We drive to outside St Louis as family life still continues, Ollie needs school shoes as he is back to school next Wednesday. My aim is also to buy Dana some school shoes. I enter a shop and start chatting with the shop assistant when a customer asks if I am from the UK. She is also English and has been living in the US for 6 years. We have a chat and when I ask her what part of the UK she is from, she replies Epsom, which is 20mins or so from where I live. She says she misses the UK desperately and wants to go back. We carry on chatting for a while and say goodbye. Everywhere you go people are so friendly and chatty.
We buy Ollie some school shoes, Dana however proves to be more difficult due to the splints. We decide for the few weeks she has left wearing the long splints she will wear her trainers and we will buy shoes for her ankle splints. Joy another shoe shopping trip.
Arriving back at the hotel early evening and after a short rest, I start on the homework with Dana. This involves 10 sets of 20 reps of sit to stand, weight transferring and side leg raises. At bed time it is the usual leg stretches, but that’s later and now it’s time for dinner.
Tuesday, 30 August 2011
Monday, Monday so good to me
11am is the time of our physio appointment today. The weekdays come around all too quickly and the hospital schedule raises it familiar head. Although our actual appointment is eleven we have a full list of ‘things to do’ at the hospital today. No trip to the hospital would now be complete unless we have our obligatory visit to the ortho department where we again try and get Danas splits corrected.
We thought we had sorted this issue out but hey presto, Dana is still getting a sore point on her foot and we need to get this addressed. Second item on our list today is our task of trying to get Danas sterry strips removed from her legs and calfskin that were placed on when she had her heel and hamstring surgery.
We attempted to remove these last night when giving Dana a shower as the doctors told us we could remove them after 10 days and it was actually day 12. Dana was having none of it and she was frozen to the spot petrified whist we attempted to take them off. Now the doctors also told us they would fall off, but no Danas were still stuck solid.
As we had tried yesterday we didn't feel quite confident and tentatively tried to remove them...they were not budging and the ones on her calf looked nasty which easily perturbed us from progressing anymore with our attempt to remove them. 'Mental note to ourselves, get the professionals to remove them at the hospital tomorrow!
Our 3rd and most important task on our list today was our appointment with Dr Park, the man for whom we had made this trip . We were unsure of how this would be as it was the review of Dana’s post op. We still had some questions we wanted to ask such as: Could Dana walk unaided? Did he manage to remove all the spasticity? What would he expect from her following his review? Did she pass the test?
And last on our list was the physio session.
We arrived at the hospital a bit later than we anticipated due to the fact we could not get up. We headed straight to the ortho ward where we hoped to collar Keith our friendly ortho man. Now Keith looks like what they class as the ' all American boy, tall, neat hair, fantastic teeth and muscular. He walks in and flashes his smile as always and I swear his teeth sparkle like they do on those TV ads. He gives a thumbs up and a wink, we smile back as he comes over and we explain the splits are still not right. He says no problem he'll take them to the workshop while we wait and gives his catchphrase "I'll get right on it!" and off he pops with Danas splits to visit the elves he has in his workshop. 20 minutes later Keith appears and said the splits are fixed and we head to the physio department.
Arriving at physio we meet our therapist for the day, Blaire. Now I feel sorry for Blaire as she has Dana and Blair is probably 5 months pregnant, about as big as Dana so when Dana needs moving about, you think....health and safety if you know what I mean. Blaire is good, she has what we like in our therapists....no mercy !
Blaire tells Dana to get on the couch to do some exercises and when Dana moans she says things like "Dana your moaning to somebody that doesn't care..." classic and with us going on at Dana also in the session, Dana has not choice but to just get on it. We get through the session with some resistance but not much but at the end Dana walks about 100 feet. She more or less collapses and is exhausted.
Dana has done incredibly well in this session and also managed to keep her knees apart today when walking because she was scared on getting her sterry strips caught.
We didn't have the heart to tell her she would not catch them and they would not come undone, but thought wise to keep quiet and let the fear be an aid to walking....bad parents!
Lunch bought welcome relief from the session and much needed nourishment for Dana.
2pm we found ourselves back in the hospital awaiting Dr Park. We we're shown into room 3 and told Dr Park would be shortly with us. We eagerly awaited! Dana felt nervous and so did I, not sure why but this seemed really important and almost like an approval.
Dr Park entered the room and shook our hands. He immediately asks Dana to show her walking to him. We arranged Danas walker and off she went, he watched closely, studying every move. He stopped her and asked us to alter her walker as it was too high, we obliged and off Dana went again. He nodded and smiled "Good, Good Dana " he said. He asked her to turn " Good" he repeated. She walked back to the chair and he said that she was doing really well and improving. He stretched her legs and was pleased with her progress and work she had been putting in, then tested her for loss of sensitivity and she responses as she should do with no loss
He tells us that Dana was free from spasticity now and that she can do anything she wants exercise wise. He told us it would be good for her to strengthen her muscles and we explained we had started to look at equipment to do this. He also explained that she would benefit form vigorous stretching and he asked us if we had bought the equipment he had informed us about, we informed him we had. We said we had noticed little things that had changed and he nodded in understanding.
In a way our journey through this was always going to come to this point. The point where you say " well what's the score Doctor, tell me straight" and what I heard was " everything is good" ,You can relax.
Reading this back now as I type it makes me realise what an incredible gift we have been given, a gift of life for Dana that will have some normality. sure it's going be tough but it's now up to us.
Dr Park then left us in the way he does best, he almost glides out of the room without any more questions and he's gone. Maybe it's his angle wings that carry him off quickly.
Our last task on the list was to get Dana sterry strips sorted so we venture up to the 10th floor to plead with the nurses to help us. They take one look at the sterry strips and calls a nurse practitioner, Katie to also inspect the dressings. Katie has a good look and starts touching the dressings much to Dana’s fear. After a while says they can stay on until they fall off naturally and to call her after two weeks if they don’t move. Dana is relieved, I on the other hand am not and finally we all leave the hospital at 3pm and head to the mall for a change of scenery and eventually dinner. We get into the car and the temperature says 110, time for air con again.
Back at the hotel later that evening I carry out the homework which Blaire has set Dana, which is to walk a set distance, the focus is knees apart, then focus on long strides. Sit to stand and finally weight transferring. All the exercises are done really well and the hard work shows on Dana’s red glowing face.
We thought we had sorted this issue out but hey presto, Dana is still getting a sore point on her foot and we need to get this addressed. Second item on our list today is our task of trying to get Danas sterry strips removed from her legs and calfskin that were placed on when she had her heel and hamstring surgery.
We attempted to remove these last night when giving Dana a shower as the doctors told us we could remove them after 10 days and it was actually day 12. Dana was having none of it and she was frozen to the spot petrified whist we attempted to take them off. Now the doctors also told us they would fall off, but no Danas were still stuck solid.
As we had tried yesterday we didn't feel quite confident and tentatively tried to remove them...they were not budging and the ones on her calf looked nasty which easily perturbed us from progressing anymore with our attempt to remove them. 'Mental note to ourselves, get the professionals to remove them at the hospital tomorrow!
Our 3rd and most important task on our list today was our appointment with Dr Park, the man for whom we had made this trip . We were unsure of how this would be as it was the review of Dana’s post op. We still had some questions we wanted to ask such as: Could Dana walk unaided? Did he manage to remove all the spasticity? What would he expect from her following his review? Did she pass the test?
And last on our list was the physio session.
We arrived at the hospital a bit later than we anticipated due to the fact we could not get up. We headed straight to the ortho ward where we hoped to collar Keith our friendly ortho man. Now Keith looks like what they class as the ' all American boy, tall, neat hair, fantastic teeth and muscular. He walks in and flashes his smile as always and I swear his teeth sparkle like they do on those TV ads. He gives a thumbs up and a wink, we smile back as he comes over and we explain the splits are still not right. He says no problem he'll take them to the workshop while we wait and gives his catchphrase "I'll get right on it!" and off he pops with Danas splits to visit the elves he has in his workshop. 20 minutes later Keith appears and said the splits are fixed and we head to the physio department.
Arriving at physio we meet our therapist for the day, Blaire. Now I feel sorry for Blaire as she has Dana and Blair is probably 5 months pregnant, about as big as Dana so when Dana needs moving about, you think....health and safety if you know what I mean. Blaire is good, she has what we like in our therapists....no mercy !
Blaire tells Dana to get on the couch to do some exercises and when Dana moans she says things like "Dana your moaning to somebody that doesn't care..." classic and with us going on at Dana also in the session, Dana has not choice but to just get on it. We get through the session with some resistance but not much but at the end Dana walks about 100 feet. She more or less collapses and is exhausted.
Dana has done incredibly well in this session and also managed to keep her knees apart today when walking because she was scared on getting her sterry strips caught.
We didn't have the heart to tell her she would not catch them and they would not come undone, but thought wise to keep quiet and let the fear be an aid to walking....bad parents!
Lunch bought welcome relief from the session and much needed nourishment for Dana.
2pm we found ourselves back in the hospital awaiting Dr Park. We we're shown into room 3 and told Dr Park would be shortly with us. We eagerly awaited! Dana felt nervous and so did I, not sure why but this seemed really important and almost like an approval.
Dr Park entered the room and shook our hands. He immediately asks Dana to show her walking to him. We arranged Danas walker and off she went, he watched closely, studying every move. He stopped her and asked us to alter her walker as it was too high, we obliged and off Dana went again. He nodded and smiled "Good, Good Dana " he said. He asked her to turn " Good" he repeated. She walked back to the chair and he said that she was doing really well and improving. He stretched her legs and was pleased with her progress and work she had been putting in, then tested her for loss of sensitivity and she responses as she should do with no loss
He tells us that Dana was free from spasticity now and that she can do anything she wants exercise wise. He told us it would be good for her to strengthen her muscles and we explained we had started to look at equipment to do this. He also explained that she would benefit form vigorous stretching and he asked us if we had bought the equipment he had informed us about, we informed him we had. We said we had noticed little things that had changed and he nodded in understanding.
In a way our journey through this was always going to come to this point. The point where you say " well what's the score Doctor, tell me straight" and what I heard was " everything is good" ,You can relax.
Reading this back now as I type it makes me realise what an incredible gift we have been given, a gift of life for Dana that will have some normality. sure it's going be tough but it's now up to us.
Dr Park then left us in the way he does best, he almost glides out of the room without any more questions and he's gone. Maybe it's his angle wings that carry him off quickly.
Our last task on the list was to get Dana sterry strips sorted so we venture up to the 10th floor to plead with the nurses to help us. They take one look at the sterry strips and calls a nurse practitioner, Katie to also inspect the dressings. Katie has a good look and starts touching the dressings much to Dana’s fear. After a while says they can stay on until they fall off naturally and to call her after two weeks if they don’t move. Dana is relieved, I on the other hand am not and finally we all leave the hospital at 3pm and head to the mall for a change of scenery and eventually dinner. We get into the car and the temperature says 110, time for air con again.
Back at the hotel later that evening I carry out the homework which Blaire has set Dana, which is to walk a set distance, the focus is knees apart, then focus on long strides. Sit to stand and finally weight transferring. All the exercises are done really well and the hard work shows on Dana’s red glowing face.
Sunday, 28 August 2011
Someone told me it's all happening at the Zoo!
Dana awoke this morning with much enthusiasm. it's been a long week for her and it was now Friday. This week had really thrown some curve balls as the Americans like to say and a lot of them evolved around trying to get Danas splits to not hurt her. Yesterday we visited the ortho department again to try and get them adjusted. We came out of their triumphant that lastly Danas splits were comfortable. Although it was the third time the splints required altering, the fact we can visit the orthotic department and get seen there and then is great. Further more the splints are altered within a short time.
We approached the 11am physio session which much renewed energy in that it's was going to be a great one where Dana blasted through her session. We were quite mistaken and three quarters of the way through we felt it was just not happening. Finally we said to the physio that we wanted Dana walking as she had spent a lot of time stretching and getting onto her knees. By this time the session was nearly over so we just took the bull by the horns and got Dana walking to the exit.
Dana seemed to struggle, her weight was not transferring and she seems to lean heavily on her frame......our hearts and minds sank, we seemed not to be progressing. Dana was tired and we decided that enough was enough and we would end the session.
We retreated to Starbucks that is nearby and sought solace in a double shot latte and marble cake. Dana also indulged in a hot chocolate and cake.
I understand that these sessions can sometimes seem as though you are pushing a big rock up a steep hill, I think it's natural to feel the way we are. I also understand that we are really at the start of our journey still. A journey that we often mention as a marathon instead of a sprint. What we have realised and we also need to convey is that Dr Park and his team have really given us the tools to begin our journey. But this journey is long and hard and will be years rather than months. A huge part of what Dana has to do is strengthen her legs and body to function the way it should and this is a long process, so maybe we are being a bit unrealistic with our expectations.
After the much needed caffeine break we decide to take Dana and Ollie to the Zoo in the car that we have hired. It's so nice to have freedom to drive where and when we please.
We find ourselves in Forest Park on the way to the Zoo, it's another hot day touching 90 degrees. On arrival to the Zoo we are met by a lovely lady called Donna who welcomes us to the Zoo and gives us a brief talk. We decide that it's the big cats that we want to see and head in that direction. We walk past the bears who look so hot and bored and make our way to the cats. They are lying idly in the shade and it seems that we are the idiots in the heat staring into the cages trying to gain a glance at these animals. they all look so sad and we decide to leave. As we walk around we see a train which travels around the zoo and Ollie is desperate to take a ride, so we all get on, Dana buckled in the front carriage in her wheelchair with us sitting on wooden benches. I love America, so disabled friendly, even the little train which travels around the zoo is accessible. After the 20 minute ride we get off the train and head back to the air conditioned car.
The afternoon is spent with Dana doing more physio back at the apartment and something amazing happens.
Dana is walking on her frame, straight, transferring weight, heel to toe on both legs for 137 feet. We stand in awe, it's like a different child. In fact this is what we can now see as a result of SDR and Hamstring and heel cords. Her walking is fluid, no more stiffness and her gait is fantastic, well almost.
All of a sudden it's staring to come together I think, not quite four weeks and three operations later we are at a point where I'm seeing major changes and progress, this is a cause for celebration.
We meet up with three families all from the UK who have also been on a similar journey to us. It's their last night before they go back home to face their futures with their children. They too like us have been through this emotional rollacoster over the past four weeks. A journey where they have faced the possibilities that their child could have awoken from the SDR operation, incontinent or even worse, paralyzed. They have had to make the tough decision to put their child through this procedure in spite of what could happen, but all along have put their faith in Dr Park and his team, who performed the same miracle with them as he has given us.
We have a drink or two and talk of our futures, days of struggle ahead yet excitement and we are all united in our purpose to get our children as independent as we can which will give them chances and hope every child deserves. All of the families here are strangers at the beginning yet through the Childrens Hospital network Facebook page we became friends even before we personally meet in St Louis. A SDR parent is the only person who truly can relate to the pain, emotion and guide you through, whatever stage you are at, as there is always someone who has been there. There is a bond that runs through all SDR parents.
We bid them a final farewell for now and wish them well and a safe journey and head to our room to place the night immobilizers on Dana’s legs before she goes to sleep. We all deserve to sleep in as it’s Saturday and plan to take a drive to a mall which is a half hour drive. Another hot day is forecast so an air conditioned building will feel comfortable.
It’s sad when families leave, but it won’t be long before new families arrive to start their journey. I like those before me will offer comfort to the new families and the hotel is well suited for families to get together. It may be on the shuttle bus or in the lobby or in the evening on the patio.
I can’t wait for physio on Monday and this week it’s for very different reasons and much more positive.
We approached the 11am physio session which much renewed energy in that it's was going to be a great one where Dana blasted through her session. We were quite mistaken and three quarters of the way through we felt it was just not happening. Finally we said to the physio that we wanted Dana walking as she had spent a lot of time stretching and getting onto her knees. By this time the session was nearly over so we just took the bull by the horns and got Dana walking to the exit.
Dana seemed to struggle, her weight was not transferring and she seems to lean heavily on her frame......our hearts and minds sank, we seemed not to be progressing. Dana was tired and we decided that enough was enough and we would end the session.
We retreated to Starbucks that is nearby and sought solace in a double shot latte and marble cake. Dana also indulged in a hot chocolate and cake.
I understand that these sessions can sometimes seem as though you are pushing a big rock up a steep hill, I think it's natural to feel the way we are. I also understand that we are really at the start of our journey still. A journey that we often mention as a marathon instead of a sprint. What we have realised and we also need to convey is that Dr Park and his team have really given us the tools to begin our journey. But this journey is long and hard and will be years rather than months. A huge part of what Dana has to do is strengthen her legs and body to function the way it should and this is a long process, so maybe we are being a bit unrealistic with our expectations.
After the much needed caffeine break we decide to take Dana and Ollie to the Zoo in the car that we have hired. It's so nice to have freedom to drive where and when we please.
We find ourselves in Forest Park on the way to the Zoo, it's another hot day touching 90 degrees. On arrival to the Zoo we are met by a lovely lady called Donna who welcomes us to the Zoo and gives us a brief talk. We decide that it's the big cats that we want to see and head in that direction. We walk past the bears who look so hot and bored and make our way to the cats. They are lying idly in the shade and it seems that we are the idiots in the heat staring into the cages trying to gain a glance at these animals. they all look so sad and we decide to leave. As we walk around we see a train which travels around the zoo and Ollie is desperate to take a ride, so we all get on, Dana buckled in the front carriage in her wheelchair with us sitting on wooden benches. I love America, so disabled friendly, even the little train which travels around the zoo is accessible. After the 20 minute ride we get off the train and head back to the air conditioned car.
The afternoon is spent with Dana doing more physio back at the apartment and something amazing happens.
Dana is walking on her frame, straight, transferring weight, heel to toe on both legs for 137 feet. We stand in awe, it's like a different child. In fact this is what we can now see as a result of SDR and Hamstring and heel cords. Her walking is fluid, no more stiffness and her gait is fantastic, well almost.
All of a sudden it's staring to come together I think, not quite four weeks and three operations later we are at a point where I'm seeing major changes and progress, this is a cause for celebration.
We meet up with three families all from the UK who have also been on a similar journey to us. It's their last night before they go back home to face their futures with their children. They too like us have been through this emotional rollacoster over the past four weeks. A journey where they have faced the possibilities that their child could have awoken from the SDR operation, incontinent or even worse, paralyzed. They have had to make the tough decision to put their child through this procedure in spite of what could happen, but all along have put their faith in Dr Park and his team, who performed the same miracle with them as he has given us.
We have a drink or two and talk of our futures, days of struggle ahead yet excitement and we are all united in our purpose to get our children as independent as we can which will give them chances and hope every child deserves. All of the families here are strangers at the beginning yet through the Childrens Hospital network Facebook page we became friends even before we personally meet in St Louis. A SDR parent is the only person who truly can relate to the pain, emotion and guide you through, whatever stage you are at, as there is always someone who has been there. There is a bond that runs through all SDR parents.
We bid them a final farewell for now and wish them well and a safe journey and head to our room to place the night immobilizers on Dana’s legs before she goes to sleep. We all deserve to sleep in as it’s Saturday and plan to take a drive to a mall which is a half hour drive. Another hot day is forecast so an air conditioned building will feel comfortable.
It’s sad when families leave, but it won’t be long before new families arrive to start their journey. I like those before me will offer comfort to the new families and the hotel is well suited for families to get together. It may be on the shuttle bus or in the lobby or in the evening on the patio.
I can’t wait for physio on Monday and this week it’s for very different reasons and much more positive.
Thursday, 25 August 2011
Wednesday, 24 August 2011
Stand tall, Bottom in, Head Up
Last night the night splints were tolerated until about 1am and Dana was able to sleep the rest of the night with both Knee Immobilizers for the first time. The fear in Dana’s mind is of the strips over the four incisions and she feel safer having something hug her legs for protection. Of course this is not the reason why she has to wear them, but hey if it keeps them on her all night, I’m happy.
We get ready and have breakfast before our appointment with Blaire again at 11am. The taxi is due to pick us up again this morning and agree with Dana to use the shuttle bus again on our return journey.
John greets us as usual with his words and smiles as we enter the childrens hospital and we make a detour to our pit stop for my usual coffee and sit outside in the sunshine. It’s going to be hot again today, predication is temp of 99. I confirm our return flights and will be flying back on the 17th September. Thankfully the flight is a long way off and we head towards the 4th floor for our physio session with Blaire.
Blaire greets us in her usual smiley way and has such a positive nature. She also says ‘can’t is not a word which she accepts children to use’ I am always correcting Dana when she uses ‘can’t ‘ at home . Blaire is tough and firm when she has to be yet does it in such a gentle way. She starts Dana’s physio with a few stretches and then gets her straight on the walker. This part is the most upsetting and really hard to watch. I can’t stop myself telling Dana to ‘stand tall. bottom in, head up. I have said it for so many years now, it’s as natural as saying Good Morning. As yesterday, Dana really struggles, her thighs are really weak and her knees are pulling in. Blaire decides to strap each knee with a roll of stretchy bandage. This seems to be working as she appears to be walking taller and taking wider footing. Dana become tired very quickly and soon the hour finishes. As I watch her attempt to walk each time seems the same as the last yet Blaire says it was good and doing really well. The day splints seem to be doing their job which is a relief. As we wrap up the session Blaire presents Dana with her new sticks, how far in the distance does this feel when Dana will use them. Blaire says Dana will start standing with these tomorrow..
We head to the cafeteria again as we did yesterday and have lunch before calling the shuttle to pick us up. Dana manages to step up onto the shuttle with support, it's the getting down from the shuttle which needs a different technique. Dana needed a lot of support and I practically carry her to the wheelchair. Blaire has given us homework as usual for the afternoon and evening. Before I attempt any further physio I must go grocery shopping and take the shuttle bus to the store. A while later while I am finishing, the hotel manager from our hotel approaches me in the stores and says he will wait for me and gives me a lift back to hotel. I pay at the till and push the second cart outside, expecting the shuttle bus, but no it's a proper car and a very nice one. He loads the boot with my shopping and I sit in the front. We arrive at the hotel and I put all the shopping bags on to the hotel cart to take up to my room.
Dana’s physio continues later in the afternoon. I place the bandages around each knee and she walks with her walker 50 feet, the improvement from the morning is incredible. More of the same I think over the next few days. Towards the end of the evening I do some stretching and strengthening which will build on the thigh muscles. She is exhausted and after dinner wants to go to bed and read.
I am feeling much more reassuranced and the turning point was defiantly the walking Dana did at the hotel in the afternoon with me. Well done girl, keep it up you can do this.
We get ready and have breakfast before our appointment with Blaire again at 11am. The taxi is due to pick us up again this morning and agree with Dana to use the shuttle bus again on our return journey.
John greets us as usual with his words and smiles as we enter the childrens hospital and we make a detour to our pit stop for my usual coffee and sit outside in the sunshine. It’s going to be hot again today, predication is temp of 99. I confirm our return flights and will be flying back on the 17th September. Thankfully the flight is a long way off and we head towards the 4th floor for our physio session with Blaire.
Blaire greets us in her usual smiley way and has such a positive nature. She also says ‘can’t is not a word which she accepts children to use’ I am always correcting Dana when she uses ‘can’t ‘ at home . Blaire is tough and firm when she has to be yet does it in such a gentle way. She starts Dana’s physio with a few stretches and then gets her straight on the walker. This part is the most upsetting and really hard to watch. I can’t stop myself telling Dana to ‘stand tall. bottom in, head up. I have said it for so many years now, it’s as natural as saying Good Morning. As yesterday, Dana really struggles, her thighs are really weak and her knees are pulling in. Blaire decides to strap each knee with a roll of stretchy bandage. This seems to be working as she appears to be walking taller and taking wider footing. Dana become tired very quickly and soon the hour finishes. As I watch her attempt to walk each time seems the same as the last yet Blaire says it was good and doing really well. The day splints seem to be doing their job which is a relief. As we wrap up the session Blaire presents Dana with her new sticks, how far in the distance does this feel when Dana will use them. Blaire says Dana will start standing with these tomorrow..
We head to the cafeteria again as we did yesterday and have lunch before calling the shuttle to pick us up. Dana manages to step up onto the shuttle with support, it's the getting down from the shuttle which needs a different technique. Dana needed a lot of support and I practically carry her to the wheelchair. Blaire has given us homework as usual for the afternoon and evening. Before I attempt any further physio I must go grocery shopping and take the shuttle bus to the store. A while later while I am finishing, the hotel manager from our hotel approaches me in the stores and says he will wait for me and gives me a lift back to hotel. I pay at the till and push the second cart outside, expecting the shuttle bus, but no it's a proper car and a very nice one. He loads the boot with my shopping and I sit in the front. We arrive at the hotel and I put all the shopping bags on to the hotel cart to take up to my room.
Dana’s physio continues later in the afternoon. I place the bandages around each knee and she walks with her walker 50 feet, the improvement from the morning is incredible. More of the same I think over the next few days. Towards the end of the evening I do some stretching and strengthening which will build on the thigh muscles. She is exhausted and after dinner wants to go to bed and read.
I am feeling much more reassuranced and the turning point was defiantly the walking Dana did at the hotel in the afternoon with me. Well done girl, keep it up you can do this.
Tuesday, 23 August 2011
A move in the right direction
Today is the start of a new week and my attention turns to what the outcome of today’s physio session will be. Focus for today and the rest of the week is to strengthen Dana’s legs and a return to at least pre operations.
The taxi has been booked for 8.30am which takes us to the Childrens Hospital. The first point of call is the orthotic department following an email this morning confirming Keith is able to alter Dana’s splints before physio at 11am. The department is busy yet has calmness. There are no screaming children, no loud voices. I think the x box games helps plus having a fish tank as a focal point in the middle of the room. Keith soon appears and shakes my hand and asks how we are. He thanked me for my email, which I said I hope he didn’t mind me emailing him. He replied no at all, you can email me anytime. Keith examined Dana’s splints and Dana explained where they felt tight. Within ten minutes he had made the longer splints wider and we were out of there.
Physio is at 11am and we had an hour to go, so we head to Starbucks and thankfully the rain has stopped. We speak to John and he knows where I’m heading, he getting to know us very well. We have a brief chat about Grace and Dr Park who are featured in the hospitals newspaper I notice he has hightlighted some sections and seems very interested in the feature. John admits he really didn’t appreciate how amazing Dr Park is and mentioned he will make a point to shake his hand when he walks into the hospital. Starbucks also gives me the opportunity to catch up on emails. Finally I have a decent cup of coffee, I order double shots, single shots is far too weak, yuk . Just before physio we have just enough time to pick up a few solution swabs which will make taking the leg dressings easier for us and Dana. I ask a RN my request and she replies no problem how many do you need. After I explain, the RN hands me a couple of strips. Dana starts to complain the splints are starting to hurt as we make our way to the therapy department.
Blaire meets us in the waiting area where we are chatting with another family and leads us into the physio area. Dana mentions the splints are hurting and advise we have already seen Keith. Dana manages to a couple of minutes on the leg press and some standing on her frame while kicking a ball. She is in real pain now so Blaire takes off the splints and sees a pressure point on her foot. It is throbbing and red. Blaire puts a band aid as a cushion and the physio continues. Blaire now suggests walking with the walker. Now imagine Dana has more strength in one of her legs so her walking pattern is less lifting her foot more dragging. The momentum that Dana is told before stepping forward is transfer weight, lift leg and step through. She is supported quite a bit by Blaire and struggles to walk less distance she had previously walked post SDR. Her face is one of grit and determination and it takes every ounce of strength to walk. Blaire suggests a few exercises which I need to focus on and agree to work on this later that afternoon at the hotel.
The work Dana has given today is 110 % and wish improvements can be matched to the amount of hard work shown. Sadly it can’t, well not straight away. The more she continues to work this well the rewards will show for themselves.
Blaire suggests she walk with us to see Keith and as we walk to the orthotics department, Keith appears. Yet again nothing is too much trouble as Keith takes a look at the pressure point left on Dana’s foot and after a few minutes Keith has adjusted the ankle splint this time and refits both on Dana. It’s now lunchtime and in two and a half hours we have had the splints adjusted twice and have a physio session. Food is a welcome relief now and head to the cafeteria for lunch.
The taxi is booked to pick us up at 1.30 from the hospital, now it is nearly 2pm and we are still waiting. I call and ask if he is on his way to be told he has forgotten and will be with us in 20 minutes. This just , well you can imagine how I feel, and after nearly an hour of waiting, the taxi turns up and I politely explain the implications of not turning up on time.
We arrive at the hotel and head back to our room, I now have the joy of removing all four dressings from Dana’s legs and quickly get the solution swabs from my bag which the RN gave me. If there was an Oscar for loudest scream and acting award Dana will win. Believe me it was not the most pleasant job to do and I’m not a natural when it comes to things like this. Yes they are all removed after nearly an hour and the shower finally awaits..
Today has been a move in the right direction by getting Dana on her feet and ensuring the splints are suitable. We can only build on today for further session this week while keeping up with the stretches twice a day. I am truly grateful to a few of the SDR mums who know exactly what to say as they have been there. I appreciate the honesty and clear view of things to come, even if I can’t see it just yet. EC, you also are there for me on the other end of this virtual world day or night. I thank you all. I am told to stay strong which I do on the outside, inside I’m a mess – no one sees that part, Dana doesn’t. She has a strong mum who is positive and truly believes every part of human nature and behavior is being tested.
The taxi has been booked for 8.30am which takes us to the Childrens Hospital. The first point of call is the orthotic department following an email this morning confirming Keith is able to alter Dana’s splints before physio at 11am. The department is busy yet has calmness. There are no screaming children, no loud voices. I think the x box games helps plus having a fish tank as a focal point in the middle of the room. Keith soon appears and shakes my hand and asks how we are. He thanked me for my email, which I said I hope he didn’t mind me emailing him. He replied no at all, you can email me anytime. Keith examined Dana’s splints and Dana explained where they felt tight. Within ten minutes he had made the longer splints wider and we were out of there.
Physio is at 11am and we had an hour to go, so we head to Starbucks and thankfully the rain has stopped. We speak to John and he knows where I’m heading, he getting to know us very well. We have a brief chat about Grace and Dr Park who are featured in the hospitals newspaper I notice he has hightlighted some sections and seems very interested in the feature. John admits he really didn’t appreciate how amazing Dr Park is and mentioned he will make a point to shake his hand when he walks into the hospital. Starbucks also gives me the opportunity to catch up on emails. Finally I have a decent cup of coffee, I order double shots, single shots is far too weak, yuk . Just before physio we have just enough time to pick up a few solution swabs which will make taking the leg dressings easier for us and Dana. I ask a RN my request and she replies no problem how many do you need. After I explain, the RN hands me a couple of strips. Dana starts to complain the splints are starting to hurt as we make our way to the therapy department.
Blaire meets us in the waiting area where we are chatting with another family and leads us into the physio area. Dana mentions the splints are hurting and advise we have already seen Keith. Dana manages to a couple of minutes on the leg press and some standing on her frame while kicking a ball. She is in real pain now so Blaire takes off the splints and sees a pressure point on her foot. It is throbbing and red. Blaire puts a band aid as a cushion and the physio continues. Blaire now suggests walking with the walker. Now imagine Dana has more strength in one of her legs so her walking pattern is less lifting her foot more dragging. The momentum that Dana is told before stepping forward is transfer weight, lift leg and step through. She is supported quite a bit by Blaire and struggles to walk less distance she had previously walked post SDR. Her face is one of grit and determination and it takes every ounce of strength to walk. Blaire suggests a few exercises which I need to focus on and agree to work on this later that afternoon at the hotel.
The work Dana has given today is 110 % and wish improvements can be matched to the amount of hard work shown. Sadly it can’t, well not straight away. The more she continues to work this well the rewards will show for themselves.
Blaire suggests she walk with us to see Keith and as we walk to the orthotics department, Keith appears. Yet again nothing is too much trouble as Keith takes a look at the pressure point left on Dana’s foot and after a few minutes Keith has adjusted the ankle splint this time and refits both on Dana. It’s now lunchtime and in two and a half hours we have had the splints adjusted twice and have a physio session. Food is a welcome relief now and head to the cafeteria for lunch.
The taxi is booked to pick us up at 1.30 from the hospital, now it is nearly 2pm and we are still waiting. I call and ask if he is on his way to be told he has forgotten and will be with us in 20 minutes. This just , well you can imagine how I feel, and after nearly an hour of waiting, the taxi turns up and I politely explain the implications of not turning up on time.
We arrive at the hotel and head back to our room, I now have the joy of removing all four dressings from Dana’s legs and quickly get the solution swabs from my bag which the RN gave me. If there was an Oscar for loudest scream and acting award Dana will win. Believe me it was not the most pleasant job to do and I’m not a natural when it comes to things like this. Yes they are all removed after nearly an hour and the shower finally awaits..
Today has been a move in the right direction by getting Dana on her feet and ensuring the splints are suitable. We can only build on today for further session this week while keeping up with the stretches twice a day. I am truly grateful to a few of the SDR mums who know exactly what to say as they have been there. I appreciate the honesty and clear view of things to come, even if I can’t see it just yet. EC, you also are there for me on the other end of this virtual world day or night. I thank you all. I am told to stay strong which I do on the outside, inside I’m a mess – no one sees that part, Dana doesn’t. She has a strong mum who is positive and truly believes every part of human nature and behavior is being tested.
Monday, 22 August 2011
Days I never want repeated
The last few days and over the weekend have been the most disheartening and uncomfortable to date. Recovery following the hamstring and heel cord operation has been slow and at times felt we are going backwards. It is by far worse than recovery post SDR. Nothing prepares you for how you feel other than talking to mums who have been where I am now.
Dana is now day 5 post op and still is relying heavily on physical support. Her transfers are 90% supported and Dana is starting to side step in the transfers but again is really pushing down for physical support. You know Dana is really trying to take more weight herself, yet she has no strength. She has described how her left leg feels like lead when she tries to lift it.
I can’t see when she will get back to where she was post SDR, when she was doing so well and now we have put her way back. Was this the right thing to do? That question haunts me everyday, seeing her the way she is makes me feel awful. What have we done?
The splints, which we received on Friday are painful and need adjusting. Dana tolerated them for about 3 hrs over 3 days, she was meant to wear them for 8 hrs over 3 days. This in itself may not appear terrible to you, but to Dana it has put her back at least 3 days. During the weekend our aim was to start walking with her frame. As the splints were not tolerated, there was not even an attempt to start walking. So we continue with the stretches and transfers.
Deanna from the therapy department is great at getting back to ask when we email over the weekend to ask about the splints and what should we do/not do.
Her quick response sends a reassuring message to us and I feel we are not alone.
We are advised what to do and follow the instructions.
I am so glad we are staying for a further couple of weeks; the thought of going home at the moment is just too scary. Home is so far removed from my mind as the focus is just on Dana.
I constantly ask myself are there any other stretches we should be doing. I look for the slightest improvement, applying less pressure on me or pushing through on her feet and standing that bit taller.
Thank goodness it’s Monday, the weekend could not have ended quickly enough for me. We are back at physio at 11am and hopefully will see the orthotics team before 11am to adjust the splints and we will have a really good physio sessions.
Seriously, it is so hard at the moment to keep positive. I’m getting fed up of being in the hotel and the restriction of just using the accessible taxi. Tomorrow is the start of a new week and pray it will get better for Dana.
Dana is now day 5 post op and still is relying heavily on physical support. Her transfers are 90% supported and Dana is starting to side step in the transfers but again is really pushing down for physical support. You know Dana is really trying to take more weight herself, yet she has no strength. She has described how her left leg feels like lead when she tries to lift it.
I can’t see when she will get back to where she was post SDR, when she was doing so well and now we have put her way back. Was this the right thing to do? That question haunts me everyday, seeing her the way she is makes me feel awful. What have we done?
The splints, which we received on Friday are painful and need adjusting. Dana tolerated them for about 3 hrs over 3 days, she was meant to wear them for 8 hrs over 3 days. This in itself may not appear terrible to you, but to Dana it has put her back at least 3 days. During the weekend our aim was to start walking with her frame. As the splints were not tolerated, there was not even an attempt to start walking. So we continue with the stretches and transfers.
Deanna from the therapy department is great at getting back to ask when we email over the weekend to ask about the splints and what should we do/not do.
Her quick response sends a reassuring message to us and I feel we are not alone.
We are advised what to do and follow the instructions.
I am so glad we are staying for a further couple of weeks; the thought of going home at the moment is just too scary. Home is so far removed from my mind as the focus is just on Dana.
I constantly ask myself are there any other stretches we should be doing. I look for the slightest improvement, applying less pressure on me or pushing through on her feet and standing that bit taller.
Thank goodness it’s Monday, the weekend could not have ended quickly enough for me. We are back at physio at 11am and hopefully will see the orthotics team before 11am to adjust the splints and we will have a really good physio sessions.
Seriously, it is so hard at the moment to keep positive. I’m getting fed up of being in the hotel and the restriction of just using the accessible taxi. Tomorrow is the start of a new week and pray it will get better for Dana.
Saturday, 20 August 2011
Ouch that hurt!!!!
10 am saw us waiting in front of the residence Inn ready for another physio appointment. We saw the shuttle bus pass by, as now we have consigned ourselves to having to get a private taxi to and from the hospital and any other location that we need to get to as we cannot get Dana back on the shuttle bus until she is strong enough to weight bear and she’s far to heavy to just pick up and place her in the shuttle bus.
Joshua turned up again in his familiar cream coloured Chrysler, he’s our regular driver and always on time and courteous and his cab is always immaculate. We found him when we fist come out of having the SDR operation and realized we needed a taxi that could take Dana in the taxi in her wheelchair.
We board and are soon at the hospital. We are on tender hooks, for today we should have the splits and we need them for the weekend. The past 48 hours have taken toil on our backs and joints as we have struggled with transferring Dana to and from her chair to the toilet and bed and any other place that’s not her wheelchair. We have been afraid of overstretching her heel cords as we were warned the first day we needed to be careful.
The splits will enable us to keep Danas heel stabilized.
We arrive at the physio department and soon we see Mike who makes his way to us. He informs me that he has spoken with the office for the orthotics team and the lady he spoke with could not assure him that the splits will be available in our session today. My blood starts to boil and I feel myself starting to get angry. I quickly calm myself and think positively that we still have today before everybody effectively shuts for the weekend.
Blaire our physio for the day then appears and we proceed with her to where we will be having our session.
Dana starts gently and its soon becomes apparent to Blaire that Dana has been working hard and her strength in her legs are returning. She is able to get a good range of stretch on Danas hamstrings, and Blaire suggests that we can do some walking which she will ensure is safe for Dana. This doesn't stop Dana saying to Blaire when being stretched 'I'm in spasm and now my muscles have gone into shock' Blaire just laughs and says she must start a board with kids sayings, this one she said would be top of the list.
Blaire starts to move the equipment around and asks Dana just to use her feet on the floor whilst sitting on the bench and move up a bit. Dana starts to do this and all of a sudden lurches forward off the bench towards the floor.
I see Dana start to fall and although I’m about five feet away dive to try and catch her. I manage to break her fall and stop her from careering into the treadmill, and I fall awkwardly on my knee.
Dana is in bits and now in tears, we get her back to the bench, My knee is throbbing and a large bruise is appearing...I’m now concerned and fraught Dana has hurt herself and damaged something. We cuddle her and perform a visual check, she appears to be ok, we ask her if she’s ok and she tells us yes.
We get her quickly to perform some standing to check that everything is ok, Danas scared but we tell her she needs to ‘get back on that horse’ otherwise she will lose confidence and we need to get her in a positive place.
She listens and performs a couple of sit to stand exercises and tells us everything is ok and nothing hurts…….phew!
The physio session from that point really goes out of the window. All of the sudden Mike appears with a chap who has come to fit Dana’s splits. We all cheer. The chap then goes about fitting the splits and making adjustments to ensure they fit well. Mike then disappears and then reappears with arms full of t-shirts that he has promised which says ‘ Selective Dorsal Rhizotomy, St Louis Children’s Hospital’. These seem to be really what it says, been there, done that…now have the T-Shirt!
We then spend the rest of the session getting advice from Blaire on split usage, and protocol. We are now armed with Long leg splits for walking, ankle splits for when the long leg splints are discarded after 6-8 weeks, night splits and knee immobilizers for night time and a head full of knowledge on what we should be doing. I make notes as the time tolerated will be increased daily.
We leave the session with a feeling that we have achieved and learnt many things but have not really progressed with Dana’s physio.
Now I feel more satisfied that we still have four weeks to work with Dana in and out of physio. A lot of parents have had the hamstrings and heel cords lengthened and only had a week to work on the physio before going home.
I realize that this would be really difficult and we need for Dana to maintain the focus on her sessions in and outside the hospital.
We get back to our hotel to drop off all the equipment we now have, the sun is shining, its 90 degrees and hot and were stuck without suitable transport to get Dana around. We are also too far to walk anywhere. We know we need to go and get new shoes now for Dana’s splints tomorrow and make arrangements with Joshua to pick us up at 11am.
Role on tomorrow…It’s the weekend so a few lazy mornings, some fun and physio at ‘home’.
Joshua turned up again in his familiar cream coloured Chrysler, he’s our regular driver and always on time and courteous and his cab is always immaculate. We found him when we fist come out of having the SDR operation and realized we needed a taxi that could take Dana in the taxi in her wheelchair.
We board and are soon at the hospital. We are on tender hooks, for today we should have the splits and we need them for the weekend. The past 48 hours have taken toil on our backs and joints as we have struggled with transferring Dana to and from her chair to the toilet and bed and any other place that’s not her wheelchair. We have been afraid of overstretching her heel cords as we were warned the first day we needed to be careful.
The splits will enable us to keep Danas heel stabilized.
We arrive at the physio department and soon we see Mike who makes his way to us. He informs me that he has spoken with the office for the orthotics team and the lady he spoke with could not assure him that the splits will be available in our session today. My blood starts to boil and I feel myself starting to get angry. I quickly calm myself and think positively that we still have today before everybody effectively shuts for the weekend.
Blaire our physio for the day then appears and we proceed with her to where we will be having our session.
Dana starts gently and its soon becomes apparent to Blaire that Dana has been working hard and her strength in her legs are returning. She is able to get a good range of stretch on Danas hamstrings, and Blaire suggests that we can do some walking which she will ensure is safe for Dana. This doesn't stop Dana saying to Blaire when being stretched 'I'm in spasm and now my muscles have gone into shock' Blaire just laughs and says she must start a board with kids sayings, this one she said would be top of the list.
Blaire starts to move the equipment around and asks Dana just to use her feet on the floor whilst sitting on the bench and move up a bit. Dana starts to do this and all of a sudden lurches forward off the bench towards the floor.
I see Dana start to fall and although I’m about five feet away dive to try and catch her. I manage to break her fall and stop her from careering into the treadmill, and I fall awkwardly on my knee.
Dana is in bits and now in tears, we get her back to the bench, My knee is throbbing and a large bruise is appearing...I’m now concerned and fraught Dana has hurt herself and damaged something. We cuddle her and perform a visual check, she appears to be ok, we ask her if she’s ok and she tells us yes.
We get her quickly to perform some standing to check that everything is ok, Danas scared but we tell her she needs to ‘get back on that horse’ otherwise she will lose confidence and we need to get her in a positive place.
She listens and performs a couple of sit to stand exercises and tells us everything is ok and nothing hurts…….phew!
The physio session from that point really goes out of the window. All of the sudden Mike appears with a chap who has come to fit Dana’s splits. We all cheer. The chap then goes about fitting the splits and making adjustments to ensure they fit well. Mike then disappears and then reappears with arms full of t-shirts that he has promised which says ‘ Selective Dorsal Rhizotomy, St Louis Children’s Hospital’. These seem to be really what it says, been there, done that…now have the T-Shirt!
We then spend the rest of the session getting advice from Blaire on split usage, and protocol. We are now armed with Long leg splits for walking, ankle splits for when the long leg splints are discarded after 6-8 weeks, night splits and knee immobilizers for night time and a head full of knowledge on what we should be doing. I make notes as the time tolerated will be increased daily.
We leave the session with a feeling that we have achieved and learnt many things but have not really progressed with Dana’s physio.
Now I feel more satisfied that we still have four weeks to work with Dana in and out of physio. A lot of parents have had the hamstrings and heel cords lengthened and only had a week to work on the physio before going home.
I realize that this would be really difficult and we need for Dana to maintain the focus on her sessions in and outside the hospital.
We get back to our hotel to drop off all the equipment we now have, the sun is shining, its 90 degrees and hot and were stuck without suitable transport to get Dana around. We are also too far to walk anywhere. We know we need to go and get new shoes now for Dana’s splints tomorrow and make arrangements with Joshua to pick us up at 11am.
Role on tomorrow…It’s the weekend so a few lazy mornings, some fun and physio at ‘home’.
Friday, 19 August 2011
Step in Time
Dana has a good sleep last night without much pain, just the odd spasm and without taking Valium, which is a vast improvement on the previous night. She even tolerated her Knee Immobilizers for an hour as instructed by Blaire without too much complaining.
We have physio with Mike at 11am and hope the splints have been shipped from Washington overnight. Sitting in reception which is becoming familiar to us now and getting to know the receptionist quite well, Mike appears with his usual bright smile, hippy beads and a bright red t-shirt with a logo on the front which reads SDR Party 2011 and on the back read Mad Mike 1, which suits him very well. We chat as we walk into the therapy room about his t-shirt and about the party next year which we shall also be attending. The conversation moves on to the splints which haven’t been shipped due to the suppliers not completing the order in time. Mike is straight on the phone to ensure the splints will be on tonights shipment and assures us it will. Now where have I heard this before!!! We take no chances and as soon as physio is finished we will make our way to orthotics just to make sure.
Mike assessed Dana pain level for yesterday and today. I said she had not wanted to have any pain relief last night or this morning and Mike suggested she should take something before therapy just to take the edge off and make physio as pain free as possible. Dana is tough and does fight through the pain yet on the other hand she will think it hurts before it actually does, so physiologically it’s no bad thing giving her some medication. The session started a complete disaster as Mike suggested Dana was going to kick a ball in a net. Dana was really struggling with shuffling forward on her wheelchair so Mike could transfer her onto a normal chair. She was shouting it was hurting her heel cord or hurting her hamstrings. Dana watches to many hospital programmes and listens too well when the doctors are describing things to us. Other kids would say my leg hurts or my foot hurts. Every few minutes she would say ‘I’m having a spasm’. I don’t deny she has spasms and also I do know she was thinking it was going to hurt before it may of done. I felt like a sergeant major and hate doing it but I know she can do it and more importantly she needs to know she can do it. Mike does the chair transfer which was quite hard work, so decides to go back a few stages and builds up to where he intended to start from this morning. He gets Dana to lift her legs alternately on the spot, then step side to side, then move her feet around the chair. Finally he lifts alternate legs until she feels a pull, to give her a stretch. We get to the stage where Mike lifts Dana and she tries to march on the spot, then he makes her transfer her weight from side to side. After all this, what seems so easy to us yet probably seems like climbing a mountain to Dana he asks her when he lifts and takes her weight, to move her feet and step towards another chair positioned to the side. She attempts this several times until Mike is comfortable Dana is able to do this. She is exhausted and listens to Mike explain the more times she does this the less the painful it will be. Again we reassure Dana it will be ok and she is doing really well. All this takes 50 mins and the last 10 mins is taken up with the initial objective of kicking a ball into a net while sitting on a chair, which she does beautifully. I feel as if I’ve run the 10k again as you are concentrating on what Mike is explaining to you, hanging on his every word and looking how he is holding Dana. You absorb so much it all becomes a blur and you go though the days physio again later in the day making sure you have understood everything.
Once physio has finished we head to orthotics and speak to Keith to get a definitive answer on the splints. He confirms they are on a special order and will be shipped tonight. One of his team will need to fit them on Dana as she will have an ankle splint fitted in a long legged splint. Not sure how that will work, soon see tomorrow. Then we have the joy of shoe shopping to buy shoes to fit over the splints. These shoes will be cheap as the long legged splints will be discarded after 6 weeks. You can only imagine now when we are in the shoe shop as Dana will have her sights on a pair of shoes which will either be impractical or expensive and I will look for the cheapest but look ok for the time she needs them. Oh happy days!!
When we get back to the hotel we do repeat the mornings physio again and initial talk through the steps until clear of the process which reduces Dana’s anxiety. We do a lot of sit to stand and the more she does, the more she feels comfortable. I am reminded by Dana, she is 2 days post op, as if that will make a difference.
One of the most interesting things I have noticed is how hard the physio’s push the children and what seems perhaps not suitable in your experience actually is very appropriate. As an example when Dana had a tendon release back in the UK she was in plaster for 6 weeks. That’s 6 weeks of no physio at all. After Dana had her hamstring lengthened and heel cord, there is no plaster, as Dr Dobbs said it hinders a childs progress and on day 2 post op they are riding a bike for half an hour.
Dana wanted to socialise this evening so after dinner we head down stairs and meet other UK families who are at the same stage as us. It good seeing Dana relaxed and laughing while I’m talking to another mum. We share our experiences about our time here which to me feels like it is happening to someone else. We both feel a bit unsettled still, although there has been plenty to keep us both occupied. I am sure when we eventually return to the UK I will look back and think how did we do all this, and most importantly how did Dana manage to be so brave and tough and do what was asked of her.
We have physio with Mike at 11am and hope the splints have been shipped from Washington overnight. Sitting in reception which is becoming familiar to us now and getting to know the receptionist quite well, Mike appears with his usual bright smile, hippy beads and a bright red t-shirt with a logo on the front which reads SDR Party 2011 and on the back read Mad Mike 1, which suits him very well. We chat as we walk into the therapy room about his t-shirt and about the party next year which we shall also be attending. The conversation moves on to the splints which haven’t been shipped due to the suppliers not completing the order in time. Mike is straight on the phone to ensure the splints will be on tonights shipment and assures us it will. Now where have I heard this before!!! We take no chances and as soon as physio is finished we will make our way to orthotics just to make sure.
Mike assessed Dana pain level for yesterday and today. I said she had not wanted to have any pain relief last night or this morning and Mike suggested she should take something before therapy just to take the edge off and make physio as pain free as possible. Dana is tough and does fight through the pain yet on the other hand she will think it hurts before it actually does, so physiologically it’s no bad thing giving her some medication. The session started a complete disaster as Mike suggested Dana was going to kick a ball in a net. Dana was really struggling with shuffling forward on her wheelchair so Mike could transfer her onto a normal chair. She was shouting it was hurting her heel cord or hurting her hamstrings. Dana watches to many hospital programmes and listens too well when the doctors are describing things to us. Other kids would say my leg hurts or my foot hurts. Every few minutes she would say ‘I’m having a spasm’. I don’t deny she has spasms and also I do know she was thinking it was going to hurt before it may of done. I felt like a sergeant major and hate doing it but I know she can do it and more importantly she needs to know she can do it. Mike does the chair transfer which was quite hard work, so decides to go back a few stages and builds up to where he intended to start from this morning. He gets Dana to lift her legs alternately on the spot, then step side to side, then move her feet around the chair. Finally he lifts alternate legs until she feels a pull, to give her a stretch. We get to the stage where Mike lifts Dana and she tries to march on the spot, then he makes her transfer her weight from side to side. After all this, what seems so easy to us yet probably seems like climbing a mountain to Dana he asks her when he lifts and takes her weight, to move her feet and step towards another chair positioned to the side. She attempts this several times until Mike is comfortable Dana is able to do this. She is exhausted and listens to Mike explain the more times she does this the less the painful it will be. Again we reassure Dana it will be ok and she is doing really well. All this takes 50 mins and the last 10 mins is taken up with the initial objective of kicking a ball into a net while sitting on a chair, which she does beautifully. I feel as if I’ve run the 10k again as you are concentrating on what Mike is explaining to you, hanging on his every word and looking how he is holding Dana. You absorb so much it all becomes a blur and you go though the days physio again later in the day making sure you have understood everything.
Once physio has finished we head to orthotics and speak to Keith to get a definitive answer on the splints. He confirms they are on a special order and will be shipped tonight. One of his team will need to fit them on Dana as she will have an ankle splint fitted in a long legged splint. Not sure how that will work, soon see tomorrow. Then we have the joy of shoe shopping to buy shoes to fit over the splints. These shoes will be cheap as the long legged splints will be discarded after 6 weeks. You can only imagine now when we are in the shoe shop as Dana will have her sights on a pair of shoes which will either be impractical or expensive and I will look for the cheapest but look ok for the time she needs them. Oh happy days!!
When we get back to the hotel we do repeat the mornings physio again and initial talk through the steps until clear of the process which reduces Dana’s anxiety. We do a lot of sit to stand and the more she does, the more she feels comfortable. I am reminded by Dana, she is 2 days post op, as if that will make a difference.
One of the most interesting things I have noticed is how hard the physio’s push the children and what seems perhaps not suitable in your experience actually is very appropriate. As an example when Dana had a tendon release back in the UK she was in plaster for 6 weeks. That’s 6 weeks of no physio at all. After Dana had her hamstring lengthened and heel cord, there is no plaster, as Dr Dobbs said it hinders a childs progress and on day 2 post op they are riding a bike for half an hour.
Dana wanted to socialise this evening so after dinner we head down stairs and meet other UK families who are at the same stage as us. It good seeing Dana relaxed and laughing while I’m talking to another mum. We share our experiences about our time here which to me feels like it is happening to someone else. We both feel a bit unsettled still, although there has been plenty to keep us both occupied. I am sure when we eventually return to the UK I will look back and think how did we do all this, and most importantly how did Dana manage to be so brave and tough and do what was asked of her.
Thursday, 18 August 2011
Another Discharge Day and another bag full of medication
Dana has a really uncomfortable night last night with spasms in her legs lasting around four hours on and off. The spasms really hit hard and she screams in pain. Deep breathing eases the pain a bit and Dana refuses to take pain relief, but after a few hours I call the nurse to give her some pain relief which by this point was around 11pm. Dana is crying which is a mixture of pain, the effects of surgery and needing to sleep. She settles down around midnight although she is talking throughout the night calling my name and asking for help, which when I look up she is sleeping. This coupled with the nurses coming in every few hours to take Dana's stats makes for a sleepless night.
I must of drifted off to sleep as two figures appeared beside Dana's bed which made me jump. Two of Dr Dobbs' team came and reviewed Dana at 6am. Not a cute doctor in sight this time. I soon woke up and started talking with the doctors who are happy to discharge Dana today and also answer my queries, which is mainly to do with the dressings as one has leaked and was advised to just put another dressing on top. This is not pretty however is normal, as is the tenderness Dana is feeling especially in the heel and of course the spasms which is very common after this surgery. The main concern for Dana is the IV line which is also being removed today. I wasn't prepared just how much more pain Dana would be in this time round, mainly to do with the spasms and also how dependant she has become again. We really are back to the beginning, which is upsetting, yet when I think of the long term benefits this is really just a minor hiccup. It is hard on a daily basis.
The doctor did make me laugh when I asked if she was able to remove the dressing from her SDR operation. She said everyone in the OR had it in their minds that Dana was not to leave the OR until this dressing was taken off. She said it was like a cross check by a whole number of people, every one was asking, making sure the dressing had been removed. The scar looks lovely and straight as if Dr Park had used a ruler and so small.
When the doctors had left, all I wanted to do is get back into bed, believe me this was not going to happen. I ordered breakfast and while we were waiting give Dana a freshen up before Blaire arrived. In a space of 45 mins we had a nurse, nurse practitioner, breakfast and Blaire arrive one after the other. Fortunately Dana was eating some dry cornflakes when Blaire showed up which didn't stop Blaire just getting on with showing the stretches which are important to do today. Dana was still having the odd spasms yet seemed to cope with it better during the day than at night. Each time Blaire attempted to touch Dana, Dana would clam up, this is no good for stretching nor for the spasms. We encourage yet again deep breathing, Dana pants which makes us laugh. Dana is not impressed but I feel better. Dana makes steady movements as Blaire shows us what to do and then we repeat. After an hour Blaire goes and now I can finally eat my breakfast, as her physio session with Mike is at 11am.
Dana catches up with her friends on Facebook while I pop down to pharmacy and pick up the medication. While I'm gone I hear there was a dog visitor which freaked her out. Poor animals. Mike also arrives and brings with him a bike. The look on Dana's face is horror. Yet she does really well and manages to ride for half an hour around the hospital twice. I'm tiring just walking, hate to think how Dana feels. We head back to the room and Mike goes through showing how to transfer Dana. This is familiar as we are back where we were post SDR. When Mike leaves Dana officially gets discharged and with a bag full of medication head to the cafeteria for some lunch.
Some butterflies are being released on the roof garden so we head up to the 8th floor and take a look. Dana's not impressed at all and just wants to get back to the hotel, while Ollie is so excited and manages to hold a few on his finger. We call for the usual assessable taxi and are soon walking through the hotel lobby. It feels so good to be back and the thought of no further operation just lots of hard work.
I give Dana some pain relief which helps and I end up falling asleep. I never fall asleep in the afternoons yet my body had other idea. I even miss a telephone call and notice the light on the answer phone flash. I do a few stretches with Dana to keep the momentum going as it is so important to keep the legs moving and also build up the strength in the quads. It takes all of Dana's strength to complete the set and does really well.
I feel the focus has moved away from the SDR operation and very much now on post op hamstrings and heel cords which I suppose all equals to strengthening her legs to enable function. It is sometimes quite overwhelming for us as parents to keep up with all the information given to us. We want to do the right thing for our children, encouraging and motivating them, but inside you have run out of steam, yet somehow the energy comes back at just the right moment. It is comforting knowing other families are going through the same thing, yet I do find myself in my own little bubble whereby my focus is purely Dana and I really do not want to know about anything else.
Dana is back with Mike tomorrow at 11am so at least she is able to have a restful morning. Hoping the pain is that much better and the splints have finally arrived.
I must of drifted off to sleep as two figures appeared beside Dana's bed which made me jump. Two of Dr Dobbs' team came and reviewed Dana at 6am. Not a cute doctor in sight this time. I soon woke up and started talking with the doctors who are happy to discharge Dana today and also answer my queries, which is mainly to do with the dressings as one has leaked and was advised to just put another dressing on top. This is not pretty however is normal, as is the tenderness Dana is feeling especially in the heel and of course the spasms which is very common after this surgery. The main concern for Dana is the IV line which is also being removed today. I wasn't prepared just how much more pain Dana would be in this time round, mainly to do with the spasms and also how dependant she has become again. We really are back to the beginning, which is upsetting, yet when I think of the long term benefits this is really just a minor hiccup. It is hard on a daily basis.
The doctor did make me laugh when I asked if she was able to remove the dressing from her SDR operation. She said everyone in the OR had it in their minds that Dana was not to leave the OR until this dressing was taken off. She said it was like a cross check by a whole number of people, every one was asking, making sure the dressing had been removed. The scar looks lovely and straight as if Dr Park had used a ruler and so small.
When the doctors had left, all I wanted to do is get back into bed, believe me this was not going to happen. I ordered breakfast and while we were waiting give Dana a freshen up before Blaire arrived. In a space of 45 mins we had a nurse, nurse practitioner, breakfast and Blaire arrive one after the other. Fortunately Dana was eating some dry cornflakes when Blaire showed up which didn't stop Blaire just getting on with showing the stretches which are important to do today. Dana was still having the odd spasms yet seemed to cope with it better during the day than at night. Each time Blaire attempted to touch Dana, Dana would clam up, this is no good for stretching nor for the spasms. We encourage yet again deep breathing, Dana pants which makes us laugh. Dana is not impressed but I feel better. Dana makes steady movements as Blaire shows us what to do and then we repeat. After an hour Blaire goes and now I can finally eat my breakfast, as her physio session with Mike is at 11am.
Dana catches up with her friends on Facebook while I pop down to pharmacy and pick up the medication. While I'm gone I hear there was a dog visitor which freaked her out. Poor animals. Mike also arrives and brings with him a bike. The look on Dana's face is horror. Yet she does really well and manages to ride for half an hour around the hospital twice. I'm tiring just walking, hate to think how Dana feels. We head back to the room and Mike goes through showing how to transfer Dana. This is familiar as we are back where we were post SDR. When Mike leaves Dana officially gets discharged and with a bag full of medication head to the cafeteria for some lunch.
Some butterflies are being released on the roof garden so we head up to the 8th floor and take a look. Dana's not impressed at all and just wants to get back to the hotel, while Ollie is so excited and manages to hold a few on his finger. We call for the usual assessable taxi and are soon walking through the hotel lobby. It feels so good to be back and the thought of no further operation just lots of hard work.
I give Dana some pain relief which helps and I end up falling asleep. I never fall asleep in the afternoons yet my body had other idea. I even miss a telephone call and notice the light on the answer phone flash. I do a few stretches with Dana to keep the momentum going as it is so important to keep the legs moving and also build up the strength in the quads. It takes all of Dana's strength to complete the set and does really well.
I feel the focus has moved away from the SDR operation and very much now on post op hamstrings and heel cords which I suppose all equals to strengthening her legs to enable function. It is sometimes quite overwhelming for us as parents to keep up with all the information given to us. We want to do the right thing for our children, encouraging and motivating them, but inside you have run out of steam, yet somehow the energy comes back at just the right moment. It is comforting knowing other families are going through the same thing, yet I do find myself in my own little bubble whereby my focus is purely Dana and I really do not want to know about anything else.
Dana is back with Mike tomorrow at 11am so at least she is able to have a restful morning. Hoping the pain is that much better and the splints have finally arrived.
Wednesday, 17 August 2011
Up and Down
We are due at the hospital for 10.30 this morning and I discreetly eat some breakfast as Dana is not allowed to eat anything since midnight last night. I aim to be at the hospital as soon as possible to establish if the splints will arrive this week. Blaire had informed us yesterday Dana is unable to walk without splints as this may lengthen the hamstrings further which would cause problems. So I was a bit anxious to find out where we stood and should we in fact even go ahead with the operation today.
We arrive at the hospital and make our way to the 4th floor to speak to Blaire, who is featured in the hospitals newspaper this week with another UK child who also has had SDR. Anyway I speak to Blaire who confirmed the splints have been sent to the supplier in Washington, however may not arrive until Monday. Now I am really panicking, what do I do? Blaire makes another phone call and confirms the splints should be with us by Thursday and says she will visit us in the ward later in the afternoon. My thoughts turn to all the hard work Dana has done during the last week and not being able to attempt to start taking steps until worst case scenario Monday, surely that can't be right. Blaire assures me the splints will be with us by Thursday and on that reassurance we go ahead with the op.
We make our way to the 6th floor and are familiar with the procedure, checking in at reception the receptionist greets Dana personally as we approach the desk and I look around and stop at the door which is the room we spent the morning of 4th August in when Dana was in surgery for SDR. There is another name on the door, another child in surgery and another family going through the same emotions I went through that day. My heart sank, firstly because we have come through that stage and secondly because I deeply felt for the family. I mentioned to the receptionist we were in there and she said all Dr Park's children get the 1st class treatment and I replied to seeing one of the cubicles assigned to us, we were now in economy or coach class as they say in America. I follow the nurse to the bed assigned to Dana for the pre med and we follow exactly the same procedure as a few weeks ago. A child life specialist introduced him self and talks with Dana for a while. Then again as before a whole series of professionals came in to Dana's cubicle. We had the same Nurse Practitioner who remembered Dana from last time. The nurse came in with Dana's pre med and I knew we were going to have a difficult time again. Dana refused to accept it and said she was not having the operation and fixed her lips tight. It took us 15 mins and a threat of giving the pre med by injection for Dana to finally take it orally. She is a real nightmare with pre meds. Dr Dobbs came in shortly after and we had a really good conversation about the procedure again and I asked about growth spurts and future operations. He replied and said Dana will not require further surgery and the physio, ie all the stretching we do will maintain the legs supple. I felt as if a weight had been lifted. You know even with Dr Park we have conversations about Dana, not just about SDR or the other surgery, but also about the future and how her body will be when she is older. Finally we have two doctors who as a parent can actually relate to and not feel as if my child is just a number. There is a plan here, a plan in which you are able to develop a timeline and see the progress made and also know what you have still to achieve. As a parent you are part of a conversation here and not feel you are talked at, as you are in the UK. There have been lot of occasions in the UK when I have raised concerns and been fobbed off by the doctors saying to me 'lets review in 6 months' or 'lets see how things go' The truth is they are playing with childrens lives and leaving things rolling over for years and years will add complications as the child grows. Believe me Dana is living proof of this and playing roulette with children has got to stop.
Dana gave me strict instructions not to walk with her part way to the OR and that she wanted to go alone with the nurses. This is while she had facebooked her friends and updated them on the pre med. Why I do not know, I just let it go, anything for peace. Dana was true to her word and with the orange flavoured mask in her hands, kissed her and said see you later, she was wheeled to the OR. How can she be brave during this bit and not take a bit of pre med??? She told the nurses to take it slow as she wanted to take in the scenery to the OR. Very weird. I took all the belonging to the cubicle and waited for that phone call to say all is well. With Ollie in the sibling room it was defiantly time for a coffee.
On my return I see the family who are in the 1st class room and have a really good chat with them. They look so frightened and I can really relate to what she was feeling and saying. The hour goes by so quickly and the phone call comes through. It's Dr Dobbs to say the operation went extremely well and he managed to get a very good stretch and we will be very pleased with the results. What fantastic news and I sigh with relief. I'm still on a high from being told no more surgery. Another call comes through shortly after to say Dana is in recovery. She looked so much better than when I saw her after SDR and soon after we all make our way to the 10th floor.
The layout on the 10th floor is much the same as the 12th and Dana has a room to herself again. No Amish family in sight this time. At our pre op consultation we were asked if Dana would stay the night as they recommend it and I said yes. Yet out of three children I knew was having the same procedure today, Dana is the only one who has stayed. I am so glad we decided to stay as Dana has been having terrible muscle spasms and she has a bit of leakage from one of the dressings. I would not know what to do if I was in the hotel.
When we arrive in her room, Dana is in a really bad mood, I know again it's the medication and that fact she hates the IV line and complains even further as it is in the wrist, Ooh! She is not in any pain at the moment but her attitude is awful and embarrassing. She slips in conversation when she was wheeled to the OR, she was actually in the OR awake as they moved her onto the operating table, then she was put to sleep after that. How can she go through this and not able to take the pre med. Blaire comes in as promised and chats through the splint issue and how we progress with physio. She suggested returning in the morning at 8.30 and then Dana is scheduled with Mike anyway at 11am and he will come to the ward instead of us going to the therapy department. Dana will need to be transferred as before whereby she is lifted to transfer. Great we really are back to Day 1.
Dana has some pasta for dinner as she is so hungry but need to be careful eating too much, so we start with Water and crackers. She even has a hot chocolate which the nurse makes for her. During the night she is suffering from terrible spasms and get some pain relief.
Physio will resume tomorrow and its going to be a painful one, hopefully she will manage the pain with medications and we can work on some bed stretches. Let's hope.
We arrive at the hospital and make our way to the 4th floor to speak to Blaire, who is featured in the hospitals newspaper this week with another UK child who also has had SDR. Anyway I speak to Blaire who confirmed the splints have been sent to the supplier in Washington, however may not arrive until Monday. Now I am really panicking, what do I do? Blaire makes another phone call and confirms the splints should be with us by Thursday and says she will visit us in the ward later in the afternoon. My thoughts turn to all the hard work Dana has done during the last week and not being able to attempt to start taking steps until worst case scenario Monday, surely that can't be right. Blaire assures me the splints will be with us by Thursday and on that reassurance we go ahead with the op.
We make our way to the 6th floor and are familiar with the procedure, checking in at reception the receptionist greets Dana personally as we approach the desk and I look around and stop at the door which is the room we spent the morning of 4th August in when Dana was in surgery for SDR. There is another name on the door, another child in surgery and another family going through the same emotions I went through that day. My heart sank, firstly because we have come through that stage and secondly because I deeply felt for the family. I mentioned to the receptionist we were in there and she said all Dr Park's children get the 1st class treatment and I replied to seeing one of the cubicles assigned to us, we were now in economy or coach class as they say in America. I follow the nurse to the bed assigned to Dana for the pre med and we follow exactly the same procedure as a few weeks ago. A child life specialist introduced him self and talks with Dana for a while. Then again as before a whole series of professionals came in to Dana's cubicle. We had the same Nurse Practitioner who remembered Dana from last time. The nurse came in with Dana's pre med and I knew we were going to have a difficult time again. Dana refused to accept it and said she was not having the operation and fixed her lips tight. It took us 15 mins and a threat of giving the pre med by injection for Dana to finally take it orally. She is a real nightmare with pre meds. Dr Dobbs came in shortly after and we had a really good conversation about the procedure again and I asked about growth spurts and future operations. He replied and said Dana will not require further surgery and the physio, ie all the stretching we do will maintain the legs supple. I felt as if a weight had been lifted. You know even with Dr Park we have conversations about Dana, not just about SDR or the other surgery, but also about the future and how her body will be when she is older. Finally we have two doctors who as a parent can actually relate to and not feel as if my child is just a number. There is a plan here, a plan in which you are able to develop a timeline and see the progress made and also know what you have still to achieve. As a parent you are part of a conversation here and not feel you are talked at, as you are in the UK. There have been lot of occasions in the UK when I have raised concerns and been fobbed off by the doctors saying to me 'lets review in 6 months' or 'lets see how things go' The truth is they are playing with childrens lives and leaving things rolling over for years and years will add complications as the child grows. Believe me Dana is living proof of this and playing roulette with children has got to stop.
Dana gave me strict instructions not to walk with her part way to the OR and that she wanted to go alone with the nurses. This is while she had facebooked her friends and updated them on the pre med. Why I do not know, I just let it go, anything for peace. Dana was true to her word and with the orange flavoured mask in her hands, kissed her and said see you later, she was wheeled to the OR. How can she be brave during this bit and not take a bit of pre med??? She told the nurses to take it slow as she wanted to take in the scenery to the OR. Very weird. I took all the belonging to the cubicle and waited for that phone call to say all is well. With Ollie in the sibling room it was defiantly time for a coffee.
On my return I see the family who are in the 1st class room and have a really good chat with them. They look so frightened and I can really relate to what she was feeling and saying. The hour goes by so quickly and the phone call comes through. It's Dr Dobbs to say the operation went extremely well and he managed to get a very good stretch and we will be very pleased with the results. What fantastic news and I sigh with relief. I'm still on a high from being told no more surgery. Another call comes through shortly after to say Dana is in recovery. She looked so much better than when I saw her after SDR and soon after we all make our way to the 10th floor.
The layout on the 10th floor is much the same as the 12th and Dana has a room to herself again. No Amish family in sight this time. At our pre op consultation we were asked if Dana would stay the night as they recommend it and I said yes. Yet out of three children I knew was having the same procedure today, Dana is the only one who has stayed. I am so glad we decided to stay as Dana has been having terrible muscle spasms and she has a bit of leakage from one of the dressings. I would not know what to do if I was in the hotel.
When we arrive in her room, Dana is in a really bad mood, I know again it's the medication and that fact she hates the IV line and complains even further as it is in the wrist, Ooh! She is not in any pain at the moment but her attitude is awful and embarrassing. She slips in conversation when she was wheeled to the OR, she was actually in the OR awake as they moved her onto the operating table, then she was put to sleep after that. How can she go through this and not able to take the pre med. Blaire comes in as promised and chats through the splint issue and how we progress with physio. She suggested returning in the morning at 8.30 and then Dana is scheduled with Mike anyway at 11am and he will come to the ward instead of us going to the therapy department. Dana will need to be transferred as before whereby she is lifted to transfer. Great we really are back to Day 1.
Dana has some pasta for dinner as she is so hungry but need to be careful eating too much, so we start with Water and crackers. She even has a hot chocolate which the nurse makes for her. During the night she is suffering from terrible spasms and get some pain relief.
Physio will resume tomorrow and its going to be a painful one, hopefully she will manage the pain with medications and we can work on some bed stretches. Let's hope.
Tuesday, 16 August 2011
Preparing for Part Two
We had a fairly relaxing weekend as Dana does not have physio appointments at the hospital, but we still do the stretches from the booklet which are mandatory twice daily 7 days a week. Dana also manages to walk up and down stairs and increase her time with the walker. My aim is not to push Dana to hard but to ensure enough progress is made each day she feels the difference.
It's an early start again this morning, I say early, it is in Dana's eyes. If I left Dana to wake me up we would be looking at midday. Dana does like her bed. Ollie on the other hand has a little routine in the mornings. He wakes up and gets up at 6am, helps himself to an apple and juice, turns the telly on and sits on the sofa watching TV and eating. Somethings will always be the same.
At breakfast we meet a new family who have returned for a few days as her daughter had SDR last year and the mother wanted to see Dr Park and also see the physios. Dana talked with the daughter while I had a good chat with her mum. The conversation turns to Dana's operations tomorrow and she tells me her daughter was not able to put weight through her feet for 10 days. This horrifies me, this will take Dana right back to Day 1 again. What I have learnt since being here is parents will share their experience and yes you can listen, however do not take it on board personally as each child is so very different. Yet it is really difficult to be objective when your child is going through it. I feel with tomorrows operation I'm damed if I do and damed if I don't. Dana does need both operations and it is more effective to have this done at the same time as SDR. On the other hand as a mum you really do not want to see your child in pain.
We make our way to the shuttle bus as I'm going to see if Dana can manage the steps on the bus and yes she does with help. This is so great as we don't have to use the accessible taxi. We arrive at the hospital in plenty on time and make our way to our usual pit stop Starbucks, coffee is really weak, not a bit like A&M!!! Back at the hospital we make our way to the usual 4th floor and meet another family who's daughter, Emily, is slightly older than Dana and will also have the same surgery tomorrow. We discuss tomorrow and how we are feeling as we walk into the therapy department and register at reception.
Dana's physio session this morning is with Blaire who is like the others very knowledgable and immediately starts Dana on the treadmill following a few stretches. This time Dana walks for 8 mins stopping only once for a rest. This is such an improvement and Blaire is so pleased. I notice Mike walking past and gives Dana a high five. Blaire also demo's a couple of additional stretches as Dana's thigh and pelvic area, especially on the right is extremely weak which is resulting in her leg and foot compensating. Every physio session Dana has is also an education for me. I learn something new about how Dana's body moves each day. This is coupled with guidelines written in stages dependant on post recovery week which is a therapist and parent guide. Blaire advises Dana will need her splints after tomorrows operation and must not walk without them. Walking without the splint after surgery will lengthen the hamstring further which you will not regain function. This adds another fear to my list for tomorrow, believe me this list is ever so long. Blaire calls Keith to find out if the splints are ready and leaves a message for him to return her call. Blaire also advises Dana will be sore for 3 days, so by Friday we should see an improvement, of course bearing in mind Dana has the splints and she can put weight through her feet. I leave physio feeling really unsure about tomorrow and must put my trust once again in the doctors and the physios.
We decide to travel to the mall by metro so take a walk to the nearest station which is a couple of mins from the hospital by the time you walk out of the campus. The metro is a cross between a tram and tube. People can cross the track and the stations are part of the street. The first thing I notice is a security presence and with a gun. Not sure if I feel safe or scared. I buy the train tickets @ just over $2 for a round trip and wait on the platform for the train. It feels creepy even though it is full of commuters. As we board there is a police officer in our carriage, great more security and as we pass each station I see further security guards. Its time to get off , thank goodness and we walk to the mall. A change of scenery is just what's needed and a welcome break. I Skype my cousin in Italy as Dana has never met her and we have a video chat which is really nice. Dana and Ollie say hello and meet each other for the first time.
By the time we are back at the hotel it's nearly 6pm and my mind turns to tomorrow. I will pack an over night bag in the morning as Dana will be staying the night as a precaution. A lot of families take their children back to the hotel the same day, which is not what I want to do, I'd rather Dana recover properly from the anaesthetic and get the pain relief she needs. Also Blaire said she would do a bed visit later that day. We have to be at the hospital for 10.30am, which is 4.30pm UK time and I think surgery is around midday. Dana's worry is if she has any IV lines and doesn't fully understand how much pain she may be in, I have prepared her. I think it is quite a lot to take in what ever age you are and still have to perform rehab every day.
I am thinking if extending my stay for a couple of weeks longer is going to be enough, Surly 5 more weeks we will see quite a big difference. I hope so. Home is not important and my focus is purely centred around Dana. That crystal ball will came in very handy again.
It's an early start again this morning, I say early, it is in Dana's eyes. If I left Dana to wake me up we would be looking at midday. Dana does like her bed. Ollie on the other hand has a little routine in the mornings. He wakes up and gets up at 6am, helps himself to an apple and juice, turns the telly on and sits on the sofa watching TV and eating. Somethings will always be the same.
At breakfast we meet a new family who have returned for a few days as her daughter had SDR last year and the mother wanted to see Dr Park and also see the physios. Dana talked with the daughter while I had a good chat with her mum. The conversation turns to Dana's operations tomorrow and she tells me her daughter was not able to put weight through her feet for 10 days. This horrifies me, this will take Dana right back to Day 1 again. What I have learnt since being here is parents will share their experience and yes you can listen, however do not take it on board personally as each child is so very different. Yet it is really difficult to be objective when your child is going through it. I feel with tomorrows operation I'm damed if I do and damed if I don't. Dana does need both operations and it is more effective to have this done at the same time as SDR. On the other hand as a mum you really do not want to see your child in pain.
We make our way to the shuttle bus as I'm going to see if Dana can manage the steps on the bus and yes she does with help. This is so great as we don't have to use the accessible taxi. We arrive at the hospital in plenty on time and make our way to our usual pit stop Starbucks, coffee is really weak, not a bit like A&M!!! Back at the hospital we make our way to the usual 4th floor and meet another family who's daughter, Emily, is slightly older than Dana and will also have the same surgery tomorrow. We discuss tomorrow and how we are feeling as we walk into the therapy department and register at reception.
Dana's physio session this morning is with Blaire who is like the others very knowledgable and immediately starts Dana on the treadmill following a few stretches. This time Dana walks for 8 mins stopping only once for a rest. This is such an improvement and Blaire is so pleased. I notice Mike walking past and gives Dana a high five. Blaire also demo's a couple of additional stretches as Dana's thigh and pelvic area, especially on the right is extremely weak which is resulting in her leg and foot compensating. Every physio session Dana has is also an education for me. I learn something new about how Dana's body moves each day. This is coupled with guidelines written in stages dependant on post recovery week which is a therapist and parent guide. Blaire advises Dana will need her splints after tomorrows operation and must not walk without them. Walking without the splint after surgery will lengthen the hamstring further which you will not regain function. This adds another fear to my list for tomorrow, believe me this list is ever so long. Blaire calls Keith to find out if the splints are ready and leaves a message for him to return her call. Blaire also advises Dana will be sore for 3 days, so by Friday we should see an improvement, of course bearing in mind Dana has the splints and she can put weight through her feet. I leave physio feeling really unsure about tomorrow and must put my trust once again in the doctors and the physios.
We decide to travel to the mall by metro so take a walk to the nearest station which is a couple of mins from the hospital by the time you walk out of the campus. The metro is a cross between a tram and tube. People can cross the track and the stations are part of the street. The first thing I notice is a security presence and with a gun. Not sure if I feel safe or scared. I buy the train tickets @ just over $2 for a round trip and wait on the platform for the train. It feels creepy even though it is full of commuters. As we board there is a police officer in our carriage, great more security and as we pass each station I see further security guards. Its time to get off , thank goodness and we walk to the mall. A change of scenery is just what's needed and a welcome break. I Skype my cousin in Italy as Dana has never met her and we have a video chat which is really nice. Dana and Ollie say hello and meet each other for the first time.
By the time we are back at the hotel it's nearly 6pm and my mind turns to tomorrow. I will pack an over night bag in the morning as Dana will be staying the night as a precaution. A lot of families take their children back to the hotel the same day, which is not what I want to do, I'd rather Dana recover properly from the anaesthetic and get the pain relief she needs. Also Blaire said she would do a bed visit later that day. We have to be at the hospital for 10.30am, which is 4.30pm UK time and I think surgery is around midday. Dana's worry is if she has any IV lines and doesn't fully understand how much pain she may be in, I have prepared her. I think it is quite a lot to take in what ever age you are and still have to perform rehab every day.
I am thinking if extending my stay for a couple of weeks longer is going to be enough, Surly 5 more weeks we will see quite a big difference. I hope so. Home is not important and my focus is purely centred around Dana. That crystal ball will came in very handy again.
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