The hamstring and heel tendon surgery was finished by about 9.30 this morning. Dr Dobbs phoned me from the operating theatre and said that all had gone well, and also that he thought that we will be pleased with the results.
It is now midday and we are in a room on Floor 10. Daniel has been wide awake since being in the recovery room, and he is comfortable in bed watching cartoons on TV.
Tuesday, 29 June 2010
Pre-op day
Monday had a lively start with skype calls to Daniel's school, and to home, before physio at 9am. He really enjoyed seeing his school friends and he will be glad to get back amongst them.
In therapy his orthotics were adjusted again to try to relieve a few sore red spots on his feet and ankles. The physical work started with stepping up and down on each leg while he was supported by the therapist. Next he went on to the Total Gym and on his back on the inlined bench he did 40 leg press repetitions.
The final exercise was standing up from a seated position while supported for balance by myself and the therapist. One time Daniel was stood fairly upright and we took our hands away, and for a second he stood on his own until he registered what was happening and he quickly sat down!
Later in the morning we went for a swim in the hotel pool and Daniel had ten minutes in the warm spa bath to loosen him up for tomorrow.
We are scheduled to be at the hospital at 6.15 on Tuesday morning for the hamstring and heel tendon lengthening operation, which will actually take about an hour and a half of surgery time. All being well Daniel should be taking a few steps with his walker later in the week - thankfully the loss of strength will not be as severe as straight after the rhizotomy.
Daniel seems relatively relaxed, and it helps that he knows that this is the last operation, and also that we will be coming home 3 days afterwards.
In therapy his orthotics were adjusted again to try to relieve a few sore red spots on his feet and ankles. The physical work started with stepping up and down on each leg while he was supported by the therapist. Next he went on to the Total Gym and on his back on the inlined bench he did 40 leg press repetitions.
The final exercise was standing up from a seated position while supported for balance by myself and the therapist. One time Daniel was stood fairly upright and we took our hands away, and for a second he stood on his own until he registered what was happening and he quickly sat down!
Later in the morning we went for a swim in the hotel pool and Daniel had ten minutes in the warm spa bath to loosen him up for tomorrow.
We are scheduled to be at the hospital at 6.15 on Tuesday morning for the hamstring and heel tendon lengthening operation, which will actually take about an hour and a half of surgery time. All being well Daniel should be taking a few steps with his walker later in the week - thankfully the loss of strength will not be as severe as straight after the rhizotomy.
Daniel seems relatively relaxed, and it helps that he knows that this is the last operation, and also that we will be coming home 3 days afterwards.
Monday, 28 June 2010
Last Weekend in St. Louis
On our final Saturday here we decided to visit the Gateway Arch, which is in the downtown area next to the Mississippi, and it is the highest man made monument in the US at over 630 feet high. To get to the top you sit in one of eight small five seat capsules that travel inside the steel work of the arch. At the top there are small rectangular windows where you can look out over the city or across Illinois on the other side of the river.
In the evening we went out with one of the British families we've become friendly with, who kindly asked us to join them for dinner. We all enjoyed massive hamburgers at the Hard Rock Cafe.
On Sunday Daniel's choice was to go to the zoo again and I think the highlight for him was a ride on the train there. We bumped in to another of the British families and spent quite a bit of time walking around with them which was great. Daniel really seems to enjoy spending time with the other children we've met - he gets a bit fed up just being with his old Dad!
In the evening we arranged to use the hotel barbecue with the three families from England who are going through the same treatment and we've been pleased to get to know. It was really enjoyable, all the children had good fun, and two more families who just arrived this weekend were able to join us as well. Even in sweltering St. Louis the barbecue had a typically British ending as we had to run inside when it started to pour with rain.
In the evening we went out with one of the British families we've become friendly with, who kindly asked us to join them for dinner. We all enjoyed massive hamburgers at the Hard Rock Cafe.
On Sunday Daniel's choice was to go to the zoo again and I think the highlight for him was a ride on the train there. We bumped in to another of the British families and spent quite a bit of time walking around with them which was great. Daniel really seems to enjoy spending time with the other children we've met - he gets a bit fed up just being with his old Dad!
In the evening we arranged to use the hotel barbecue with the three families from England who are going through the same treatment and we've been pleased to get to know. It was really enjoyable, all the children had good fun, and two more families who just arrived this weekend were able to join us as well. Even in sweltering St. Louis the barbecue had a typically British ending as we had to run inside when it started to pour with rain.
Saturday, 26 June 2010
A very good friend
Thankyou to all at Hampton Vale Primary school who bought raffle tickets at the fete today and expressed an interest in Daniel's joke book, soon to be published to help raise money for Daniel's medical bill.
Daniel's very good friend Luke has today been sponsored by his family and friends to spend a whole day in a wheelchair. He has raised a huge amount of money for Daniel and deserves a massive thankyou from us all.He is not even 8 until next month and has been determined to help support Daniel. Thankyou Luke you are a real star XXX
Daniel's very good friend Luke has today been sponsored by his family and friends to spend a whole day in a wheelchair. He has raised a huge amount of money for Daniel and deserves a massive thankyou from us all.He is not even 8 until next month and has been determined to help support Daniel. Thankyou Luke you are a real star XXX
Friday, 25 June 2010
St. Louis Calling, At Last
We have been really struggling with the wi-fi connection this week - thanks for updating the blog in the week Jo.
On Wednesday we had a consultation with Dr Dobbs who is the orthopaedic surgeon who will operate on Daniel next Tuesday morning. He is experienced in this type of surgery and we are confident in his abilities to do a very good job. He will make an incision on Daniel's heel tendons and also the hamstrings on the inner thigh, and this will lengthen them to help Daniel straighten his legs and walk with heels touching the ground. The procedure will take an hour and a half, and Daniel will have one night in hospital. The recovery time for Daniel's legs to strengthen will be 3 months.
Physio has been progressing well this week and Daniel is a lot stronger with his frame. He has been working on the treadmill, static cycle (with a new pb of 28mph!),and walking the balance beam a lot. He did a session on the scooter board, which is a square board on swivel wheels that you sit on and use the legs to push or pull yourself along. We had a good race around the physio suite and at the same time Daniel had a good hamstring workout.
Today (Friday) Daniel finished the session sitting in a chair and getting to a fairly upright standing position with myself and the therapist just using our hands lightly to help him balance.
Quite a bit of time has been spent adjusting Daniel's AFOs (leg braces)and the team has made a good effort to get them comfortable for Daniel. So far they have modified them four times.
This time next week we will be on the plane and I think the time will go very quickly, but we still have a lot of important work to get done yet.
Good news from back home is that Lizzie and Simon and daughter Erin have had the arrival of a new family member, baby Niamh, and so big congratulations from all of us. Totally awesome (as they say).
On Wednesday we had a consultation with Dr Dobbs who is the orthopaedic surgeon who will operate on Daniel next Tuesday morning. He is experienced in this type of surgery and we are confident in his abilities to do a very good job. He will make an incision on Daniel's heel tendons and also the hamstrings on the inner thigh, and this will lengthen them to help Daniel straighten his legs and walk with heels touching the ground. The procedure will take an hour and a half, and Daniel will have one night in hospital. The recovery time for Daniel's legs to strengthen will be 3 months.
Physio has been progressing well this week and Daniel is a lot stronger with his frame. He has been working on the treadmill, static cycle (with a new pb of 28mph!),and walking the balance beam a lot. He did a session on the scooter board, which is a square board on swivel wheels that you sit on and use the legs to push or pull yourself along. We had a good race around the physio suite and at the same time Daniel had a good hamstring workout.
Today (Friday) Daniel finished the session sitting in a chair and getting to a fairly upright standing position with myself and the therapist just using our hands lightly to help him balance.
Quite a bit of time has been spent adjusting Daniel's AFOs (leg braces)and the team has made a good effort to get them comfortable for Daniel. So far they have modified them four times.
This time next week we will be on the plane and I think the time will go very quickly, but we still have a lot of important work to get done yet.
Good news from back home is that Lizzie and Simon and daughter Erin have had the arrival of a new family member, baby Niamh, and so big congratulations from all of us. Totally awesome (as they say).
Wednesday, 23 June 2010
Technical Issues and Dr Park
Sorry the blog has not been updated for a while, we are having technical problems on both sides of the Atlantic!!On Monday of this week Daniel had a follow up appointment with Dr Park. This went really well. Firstly he was very pleased with Daniel's recovery from the SDR and was pleased that he had started walking again with his frame around the hotel. Dr Park basically reiterated his original letter to us saying that overall his balance and strength would greatly improve, enabling much better movements throughout his life. His posture would be better which in turn would reduce the risk of complications related to bone formation. He said that over time Daniel would be walking longer distances without his frame using maybe only one stick.And again he said that he expects Daniel to be able to walk unaided around the home, which will really change his life. Daniel has already said we must get a skip so he can dump his frame - but we must not get ahead of ourselves as he has alot of physio to do to acheive these outcomes. We are v excited though!
On Tuesday Daniel has had to be trying out his new Scooby Doo splints. Historically splints and Daniel do not go well together as they tend to rub his feet too much for him to be able to walk in them. Today was no exception unfortunately. After a few minutes of sitting and walking in them there were red marks on his feet. The hospital however have been very helpful and are going to try to mould them even better to suit his feet and build them up a bit. We will keep trying as he really needs to be wearing them after next weeks tendon release operation.
It is Adrian's birthday today so a big HAPPY BIRTHDAY!!! from us all!
On Tuesday Daniel has had to be trying out his new Scooby Doo splints. Historically splints and Daniel do not go well together as they tend to rub his feet too much for him to be able to walk in them. Today was no exception unfortunately. After a few minutes of sitting and walking in them there were red marks on his feet. The hospital however have been very helpful and are going to try to mould them even better to suit his feet and build them up a bit. We will keep trying as he really needs to be wearing them after next weeks tendon release operation.
It is Adrian's birthday today so a big HAPPY BIRTHDAY!!! from us all!
Monday, 21 June 2010
Go Cardinals!
No therapy for two days meant a good chance for Daniel to relax and get out and about. On Saturday we walked to Lafayette Park, which is about the size of Central Park in Peterborough, and is square in shape and lined on all sides by wide quiet roads and nice houses. The tree lined path made for a pleasant walk although the park was virtually deserted on a very hot and sunny afternoon.
Sunday was a big trip out to watch St. Louis Cardinals baseball team play Oakland. We went with a nice guy we've become friendly with whose daughter has had the same operation as Daniel.
As we entered the stadium all the children were given a plastic baseball bat and ball as a freebie which was a nice touch. We had seats in the accessible area which were great as they were about half way up the stand' which gave a good view, but importantly also we were in the shade. The stadium wasn't full but there was still 42,000 fans there and it had a pleasant family orientated atmosphere.
When St. Louis had a home run there were noisy fireworks and big celebrations, but when Oakland did the same people just chatted as if nothing had happened.
At the end it was 2-1, that's a double for Daniel of a hamburger and a hot dog but only a single hamburger for me. The baseball was 3-2 to Oakland.
In the evening I asked Daniel what he thought of the game and somewhat critically he said, "It was a bit boring really", but when I checked on him in bed later he was fast asleep clutching his new baseball bat.
Sunday was a big trip out to watch St. Louis Cardinals baseball team play Oakland. We went with a nice guy we've become friendly with whose daughter has had the same operation as Daniel.
As we entered the stadium all the children were given a plastic baseball bat and ball as a freebie which was a nice touch. We had seats in the accessible area which were great as they were about half way up the stand' which gave a good view, but importantly also we were in the shade. The stadium wasn't full but there was still 42,000 fans there and it had a pleasant family orientated atmosphere.
When St. Louis had a home run there were noisy fireworks and big celebrations, but when Oakland did the same people just chatted as if nothing had happened.
At the end it was 2-1, that's a double for Daniel of a hamburger and a hot dog but only a single hamburger for me. The baseball was 3-2 to Oakland.
In the evening I asked Daniel what he thought of the game and somewhat critically he said, "It was a bit boring really", but when I checked on him in bed later he was fast asleep clutching his new baseball bat.
Sunday, 20 June 2010
Best dad in the world
Here's a post to the best dad in the world on Fathers Day! You've done a fantastic job over the past few weeks and we are very proud of you All our love Jo and Adam
XXXXX
XXXXX
Saturday, 19 June 2010
Friday
In the morning we went downtown as we needed a couple of bits to make a running repair on Daniel's wheelchair. While we were down there we had our first proper look at the Mississippi river which, although we are no where near the coast here, is still hundreds of metres across and quite a disappointing dirty brown colour.
We walked back to the hotel and stopped for refreshment - in the 95F heat a milkshake certainly never tasted better!
Our hospital visit was late in the afternoon and Daniel started with walking in his frame around the physio suite. He completed the loop without needing a rest, and that was twice the distance he could manage only two days ago!
Next he went on the Biodex machine for the first time, and for this Daniel sat in a special chair where he had one leg in a padded clamp, and he had to extend the leg out to the front and then curl it back beneath him. The machine is actually connected to a computer with a screen that showed the torque that he was exerting in each direction instantly on a graph. Daniel loved looking at the screen as he worked and really got quite competitive (don't know where that comes from) and at one point shouted out with excitement as the graph displayed his most powerful leg extension. The therapist said how pleased he was with Daniel's enthusiasm
Afterwards Daniel walked in his frame around the suite again without stopping, and surprisingly he was even stronger and had better footwork than at the beginning of the session!
To finish Daniel was back on the static bike for a number of flat out bursts and again his determination came through with another PB of 26 mph!
Over this week's five continuous days of therapy Daniel's strength has increased tremendously. Happy days!
We walked back to the hotel and stopped for refreshment - in the 95F heat a milkshake certainly never tasted better!
Our hospital visit was late in the afternoon and Daniel started with walking in his frame around the physio suite. He completed the loop without needing a rest, and that was twice the distance he could manage only two days ago!
Next he went on the Biodex machine for the first time, and for this Daniel sat in a special chair where he had one leg in a padded clamp, and he had to extend the leg out to the front and then curl it back beneath him. The machine is actually connected to a computer with a screen that showed the torque that he was exerting in each direction instantly on a graph. Daniel loved looking at the screen as he worked and really got quite competitive (don't know where that comes from) and at one point shouted out with excitement as the graph displayed his most powerful leg extension. The therapist said how pleased he was with Daniel's enthusiasm
Afterwards Daniel walked in his frame around the suite again without stopping, and surprisingly he was even stronger and had better footwork than at the beginning of the session!
To finish Daniel was back on the static bike for a number of flat out bursts and again his determination came through with another PB of 26 mph!
Over this week's five continuous days of therapy Daniel's strength has increased tremendously. Happy days!
Friday, 18 June 2010
Thursday
Unusually we had the hospital session in the morning today and I think Daniel appreciated not having most of the day with it looming over him.
Daniel started on the static bike and managed a personal best of 25.5 mph.
Next he had to kick a full-size football at the goal, and had to score ten goals on each foot. There was significantly more power than when he had tried this last week, and that time he was also being held up by the therapist where as today he stood in his frame on his own!
The next exercise was walking with his frame but with his feet on a couple of low, narrow balance beams; and he finished by placing one foot directly in front of the other as he walked along on a beam only as wide as one foot. After that he had to walk repeatedly over a step-up block that fitted between his frame wheels.
The session finished with Daniel walking up and down a flight of about 12 steps with one hand on the bannister and the therapist holding the other hand.
We were finished by midday and that left time for us to walk to the Science Center and spend a couple of hours there, and Daniel was delighted to be able to have another go on the flight simulator. The elderly guy who was in charge insisted on trying to help Daniel and the two of them were virtually fighting over the thing; both of them having a white-knuckled hand on the single joystick. Needless to say the plane quickly went nose down in to the ground and then the guy left Daniel to do his own thing.
Daniel started on the static bike and managed a personal best of 25.5 mph.
Next he had to kick a full-size football at the goal, and had to score ten goals on each foot. There was significantly more power than when he had tried this last week, and that time he was also being held up by the therapist where as today he stood in his frame on his own!
The next exercise was walking with his frame but with his feet on a couple of low, narrow balance beams; and he finished by placing one foot directly in front of the other as he walked along on a beam only as wide as one foot. After that he had to walk repeatedly over a step-up block that fitted between his frame wheels.
The session finished with Daniel walking up and down a flight of about 12 steps with one hand on the bannister and the therapist holding the other hand.
We were finished by midday and that left time for us to walk to the Science Center and spend a couple of hours there, and Daniel was delighted to be able to have another go on the flight simulator. The elderly guy who was in charge insisted on trying to help Daniel and the two of them were virtually fighting over the thing; both of them having a white-knuckled hand on the single joystick. Needless to say the plane quickly went nose down in to the ground and then the guy left Daniel to do his own thing.
Thursday, 17 June 2010
Wednesday
With Daniel back in his walking frame yesterday the therapist decided to do a lot more work with it today. First Daniel walked with his frame around the physio suite, which was further than he could manage yesterday, and with his feet landing quite flat to the floor as well.
Next came a treadmill session where Daniel walked sideways for 2 minutes each side, backwards for 2 minutes, and then forwards for 2 minutes!
To finish there was more frame walking around the physio suite and to give everyone an idea of the intensity for Daniel, he is basically walking until his legs give way.
After a bit of a rest back in our room Daniel even managed to use his frame to walk down for our evening meal.
The progress is steady and the improvement can be seen daily. Daniel even said tonight that since the operation, "My left thumb works better now!"
Next came a treadmill session where Daniel walked sideways for 2 minutes each side, backwards for 2 minutes, and then forwards for 2 minutes!
To finish there was more frame walking around the physio suite and to give everyone an idea of the intensity for Daniel, he is basically walking until his legs give way.
After a bit of a rest back in our room Daniel even managed to use his frame to walk down for our evening meal.
The progress is steady and the improvement can be seen daily. Daniel even said tonight that since the operation, "My left thumb works better now!"
Wednesday, 16 June 2010
Tuesday
Daniel met a new friend in the hospital waiting room today, Shelley a 16 year old from Kentucky who had the rhizotomy the week before Daniel. Shelley has an engaging personality and similar mobility to Daniel, and it was really nice to speak to her and her dad for 15 minutes before the session.
Down to work and Daniel had a bit of stretching first and then had a go with his walking frame for the first time since the operation. Although he is obviously weak at present his walking with the frame was neater than his pre-op style and he was placing both feet nicely rather than dragging his feet.
Next was the treadmill and today Daniel did 3 minutes continuously at a time compared to 2 minutes a few days ago. After that he did 15 leg press repetitions on the Total Gym inclined machine, and to finish off it was back on the fixed bicycle and Daniel did numerous bursts up to 25mph. His therapist Lorie was pleased with his efforts and said to Daniel, "You must be all tuckered out!"
Daniel got in to his wheelchair but as we left our room we saw Shelley walking with her frame, and Daniel didn't need too much encouragement to get in to his walker and catch her up so that they could exit the physio suite in convoy (followed by two proud dads).
Down to work and Daniel had a bit of stretching first and then had a go with his walking frame for the first time since the operation. Although he is obviously weak at present his walking with the frame was neater than his pre-op style and he was placing both feet nicely rather than dragging his feet.
Next was the treadmill and today Daniel did 3 minutes continuously at a time compared to 2 minutes a few days ago. After that he did 15 leg press repetitions on the Total Gym inclined machine, and to finish off it was back on the fixed bicycle and Daniel did numerous bursts up to 25mph. His therapist Lorie was pleased with his efforts and said to Daniel, "You must be all tuckered out!"
Daniel got in to his wheelchair but as we left our room we saw Shelley walking with her frame, and Daniel didn't need too much encouragement to get in to his walker and catch her up so that they could exit the physio suite in convoy (followed by two proud dads).
Tuesday, 15 June 2010
Monday
Daniel had said that his legs felt tight and I told the therapist when we arrived at the physio suite. He decided to do some stretches with Daniel first and I think Daniel was quite pleased. The hard work soon began though, with the therapist supporting Daniel as he moved from sitting in a chair to a standing position repeatedly. He stood up with his feet in different positions and sometimes on small steps and these these variations helped isolate the legs and muscle groups.
Next Daniel sat on the fixed exercise bike for a number of bursts at high intensity, and he managed to get to 25mph, a personal best!
The session closed with Daniel on a type of squatting apparatus on which he laid back on an inclined bench and pressed his legs against resistance, and he very quickly got too tired to continue.
The idea of the whole session was about strength building and Daniel worked very hard. He couldn't have done these exercises a week ago, and myself and the therapist made sure that Daniel got plenty of praise to encourage him and to make sure that he knows that he is making progress.
Daniel was delighted this evening as he received some mail; a card kindly sent from his former teacher Miss Sampson in Australia.
Next Daniel sat on the fixed exercise bike for a number of bursts at high intensity, and he managed to get to 25mph, a personal best!
The session closed with Daniel on a type of squatting apparatus on which he laid back on an inclined bench and pressed his legs against resistance, and he very quickly got too tired to continue.
The idea of the whole session was about strength building and Daniel worked very hard. He couldn't have done these exercises a week ago, and myself and the therapist made sure that Daniel got plenty of praise to encourage him and to make sure that he knows that he is making progress.
Daniel was delighted this evening as he received some mail; a card kindly sent from his former teacher Miss Sampson in Australia.
Monday, 14 June 2010
Awesome Bike Ride Dudes!
Thank you everyone back home who took part in the sponsored cycle ride for Daniel, it was a tremendous effort by all you cyclists and helpers, and it looks like you even managed to enjoy yourselves a bit. Thank you very much Graham for pulling it together, much appreciated, and it was good to be able to see some photos Wayne.
Here Daniel is more comfortable for longer periods in his wheelchair now and with no hospital visits it was a chance to get out and about. We went into the Downtown area on Saturday morning to see the St.Louis version of the Race for Life, here they call it Run for the Cure, and it was quite a spectacle with 71,000 participants.
On Sunday we visited the City Museum, which actually has a tiny area devoted to traditional museum type features and the rest is mainly a children's play ground. Our favourite area was the aquarium that also featured plenty of other animals as well as fish. Daniel managed to tap on a terrapin, scare a guinea pig, and have his hand gently nibbled by a shoal of two inch long Doctor fish.
Here Daniel is more comfortable for longer periods in his wheelchair now and with no hospital visits it was a chance to get out and about. We went into the Downtown area on Saturday morning to see the St.Louis version of the Race for Life, here they call it Run for the Cure, and it was quite a spectacle with 71,000 participants.
On Sunday we visited the City Museum, which actually has a tiny area devoted to traditional museum type features and the rest is mainly a children's play ground. Our favourite area was the aquarium that also featured plenty of other animals as well as fish. Daniel managed to tap on a terrapin, scare a guinea pig, and have his hand gently nibbled by a shoal of two inch long Doctor fish.
Saturday, 12 June 2010
Sponsored bike ride
Thankyou to all that came along to our sponsored bike ride for Daniel around the 41 miles of the Green Wheel. Special thanks to uncle Graham. It was a lovely day and we had people from work, friends and family all joining in. The younger members of the group did 13 miles starting from Hampton and all did really really well.Very kind of the Boathouse, Botolph Arms and The Ramblewood to allow us to collect for Daniel - we are hoping to repeat the bike ride in some format once dad and Daniel are home from the US. Cheers everyone you have all helped Danny boy towards his goal!
Friday
After some fresh air and fruit in the nearby park Daniel entered the physio suite in a relatively energetic mood. At first the therapist Michael couldn't find the walking canes as someone had moved them, which is unusual as he is well organised, and so I held Daniel around the waist while he walked and Michael instructed. Next Daniel went on to the fixed exercise bike and really enjoyed watching the speedo and was pleased to get to 24mph.
Afterwards it was time for the Lite Gait, which is a tall metal frame on wheels from which the child is suspended in a harness to take most of their bodyweight, but at the same time their feet can touch the ground. Daniel walked around the physio suite in good style with nice foot work and then he did sideways walking, a new movement for him, and this strengthens his inner and outer thighs.
Daniel did some more hard bursts on the fixed bike to finish the session, and gasped "Phew! That was the hardest thing ever!"
"What? Harder than the walking canes?", Michael asked,
"Well you can't find 'em!", Daniel shot back.
Back in the UK Adrian Weston and partner Kirsty have just had a baby daughter, Isabel. Congratulations and best wishes to all the family from us, and thank you for following the blog.
Afterwards it was time for the Lite Gait, which is a tall metal frame on wheels from which the child is suspended in a harness to take most of their bodyweight, but at the same time their feet can touch the ground. Daniel walked around the physio suite in good style with nice foot work and then he did sideways walking, a new movement for him, and this strengthens his inner and outer thighs.
Daniel did some more hard bursts on the fixed bike to finish the session, and gasped "Phew! That was the hardest thing ever!"
"What? Harder than the walking canes?", Michael asked,
"Well you can't find 'em!", Daniel shot back.
Back in the UK Adrian Weston and partner Kirsty have just had a baby daughter, Isabel. Congratulations and best wishes to all the family from us, and thank you for following the blog.
Friday, 11 June 2010
Thanks from St. Louis
Thanks to everyone back home for your messages, cards and comments on the blog - they really mean a lot to us. Daniel loved to hear comments from his classmates today, and earlier in the week his Beaver Scout group made a big effort to make get well cards and send them over here as well as speaking to him on Skype.
Good luck to everyone participating in the sponsored bike ride tomorrow; we greatly appreciate your efforts. Hope the weather is kind for you guys - here the forecast is for a temperature of 94F. It will be nice for you cyclists to relax and watch the big game after your energetic day, although I don't think the St. Louis Cardinals will have much trouble beating Arizona.....that is the match you guys are thinking of, right?
Good luck to everyone participating in the sponsored bike ride tomorrow; we greatly appreciate your efforts. Hope the weather is kind for you guys - here the forecast is for a temperature of 94F. It will be nice for you cyclists to relax and watch the big game after your energetic day, although I don't think the St. Louis Cardinals will have much trouble beating Arizona.....that is the match you guys are thinking of, right?
Thursday, 10 June 2010
Thursday
Daniel started on the treadmill for the physio hour and he was striding out quite nicely. He had his normal ankle boots on and he wasn't dragging either foot or scraping his toes at all. He quickly got tired and his bottom gradually sank towards the treadmill belt as he squeezed the last few steps out. As he rested on a stool between bursts on the treadmill he got to practice kicking a football from the sitting position.
Next was some walking with canes with the physio holding Daniel's torso upright while I tried to help him move his feet and canes in the correct pattern. The session finished with Daniel having a choice of activity and he chose to ride the tricycle around the hospital.
Unfortunately for Daniel as we left the physio suite we met his surgeon Dr Park in the corridor, and he asked to see the now exhausted Daniel walking with me supporting his upper body.After he watched us Dr Park asked Daniel "How you get on with only the dad?" and Daniel mumbled "Because I have to!".
Next was some walking with canes with the physio holding Daniel's torso upright while I tried to help him move his feet and canes in the correct pattern. The session finished with Daniel having a choice of activity and he chose to ride the tricycle around the hospital.
Unfortunately for Daniel as we left the physio suite we met his surgeon Dr Park in the corridor, and he asked to see the now exhausted Daniel walking with me supporting his upper body.After he watched us Dr Park asked Daniel "How you get on with only the dad?" and Daniel mumbled "Because I have to!".
Fundraising
Thanks again to all involved in fundraising so far, there are a number of events over the next few months planned. The quiz scheduled for June will now be in October (date to be confirmed)we would be up against the World Cup - even Daniel can't compete with this!! All donations of prizes so far will be used at this later date. Thanks, you are all helping to change Daniel's future.
Wednesday, 9 June 2010
Wednesday
I was surprised when the session today started with walking using canes (like a crutch but they stop below the elbow). I held Daniel at the waist so he could stand upright as Michael the therapist concentrated on getting Daniel to move both of the canes and his feet with the correct technique. This was very ambitious with Daniel's current strength level, but the idea is to do this type of walking frequently in order to get the pattern of walking to come more naturally to him.
Next Daniel had to stand holding a table and then lower himself down on one knee and stand up again a few times. He finished 'standing' on his knees at the table to do a jigsaw, which was difficult for him at this stage but he tried hard.
Next Daniel had to stand holding a table and then lower himself down on one knee and stand up again a few times. He finished 'standing' on his knees at the table to do a jigsaw, which was difficult for him at this stage but he tried hard.
Tuesday
The hospital visit today was largely taken up with Daniel having castings of his lower leg and foot made. From these thin moulds they will produce orthotics designed to fit Daniel's feet closely, in order to keep them in an ideal position, and also to provide good ankle support. He will wear these during the daytime after the second operation at the end of the month. For a number of weeks Daniel will wear the full orthotics around his feet and upper calf muscles, and this will be followed by weeks with the top section of each orthotic removed down to the ankle.
There was a choice of colours and Daniel quickly decided on a Scooby-Doo design.
Daniel has always struggled with the orthotics back home as they have tended to cause blisters within minutes, and he has had infections due to the broken skin. Hopefully the type used in St. Louis will suit him a lot better and if so it will be $350 well spent.
There was still time at the end of the session for a few periods of walking on the treadmill and Daniel kept up the good work there. It is possible to see his style improving over a couple of minutes as he gets in to the groove.
Daniel is continuously having painkillers still but he is getting more comfortable all the time and he is tolerating time in his wheelchair increasingly.
There was a choice of colours and Daniel quickly decided on a Scooby-Doo design.
Daniel has always struggled with the orthotics back home as they have tended to cause blisters within minutes, and he has had infections due to the broken skin. Hopefully the type used in St. Louis will suit him a lot better and if so it will be $350 well spent.
There was still time at the end of the session for a few periods of walking on the treadmill and Daniel kept up the good work there. It is possible to see his style improving over a couple of minutes as he gets in to the groove.
Daniel is continuously having painkillers still but he is getting more comfortable all the time and he is tolerating time in his wheelchair increasingly.
Tuesday, 8 June 2010
Outpatient Therapy
We returned to the hospital today for one hour of physiotherapy, and this format will be repeated Monday to Friday until the end of the month. Daniel had been resting in the morning and I wasn't expecting him to have a great session, but he did!
He did about 20 minutes on the tricycle which he seemed to enjoy. All the hospital complex buildings are bridged by enclosed walkways at second floor level and it makes for quite a long and interesting cycle route.
Next Daniel went on the treadmill for the first time ever, and he ended up holding the handlebars to support himself and walking with a really good heel strike, in a better style than he has ever previously managed with his frame. He was pleased when I told him that he was walking like Shaggy in Scooby-Doo!
He finished being supported in a standing position and kicking a football in to a goal until he had scored ten times. He has never been able to kick a ball with his left foot before today.
The physio team are going to great lengths to make the treatment fun and stimulating for the mind as well as the body. The goals set for Daniel in the next few weeks are to treadmill for ten minutes holding on to the rails, pedal the tricycle up a slight gradient under his own power, walk ten steps using canes for support, and to stand still on his own without support!
For a treat tonight he watched Knight Rider and during one of the commercial breaks he conceded in a low voice, "The physio's not that bad really", but actually he and I are both delighted with what he achieved today in the early stages of recovery.
He did about 20 minutes on the tricycle which he seemed to enjoy. All the hospital complex buildings are bridged by enclosed walkways at second floor level and it makes for quite a long and interesting cycle route.
Next Daniel went on the treadmill for the first time ever, and he ended up holding the handlebars to support himself and walking with a really good heel strike, in a better style than he has ever previously managed with his frame. He was pleased when I told him that he was walking like Shaggy in Scooby-Doo!
He finished being supported in a standing position and kicking a football in to a goal until he had scored ten times. He has never been able to kick a ball with his left foot before today.
The physio team are going to great lengths to make the treatment fun and stimulating for the mind as well as the body. The goals set for Daniel in the next few weeks are to treadmill for ten minutes holding on to the rails, pedal the tricycle up a slight gradient under his own power, walk ten steps using canes for support, and to stand still on his own without support!
For a treat tonight he watched Knight Rider and during one of the commercial breaks he conceded in a low voice, "The physio's not that bad really", but actually he and I are both delighted with what he achieved today in the early stages of recovery.
Monday, 7 June 2010
Out of Hospital
Daniel had an hour and a half of physio today and he even managed a bit of a walk with his frame, albeit with the physio holding both of his legs each step. She said that he walked a lot further than most rhizotomy patients do five days after the operation.
This afternoon we left the hospital with mixed feelings as we liked all the staff and an extra pair of hands comes in handy with Daniel being weaker than normal. However we are pleased to get to our hotel that will be our home for the next 26 nights and to move in to the next phase of the treatment. Daniel is improving every day and hopefully the worst days of our trip are over.
Before bed time Daniel gave me his view on the television that he has seen quite a bit of in the last few days, "Daddy the problem with American telly is that it's sport or something dumb", a good point well made.
Looks like the fundraiser at Maharanis was a real success and many thanks to our friends who set the evening up, to everyone who attended, the restaurant, and of course Adey Swindells for filling in for me and doing a better job than I would have done.
This afternoon we left the hospital with mixed feelings as we liked all the staff and an extra pair of hands comes in handy with Daniel being weaker than normal. However we are pleased to get to our hotel that will be our home for the next 26 nights and to move in to the next phase of the treatment. Daniel is improving every day and hopefully the worst days of our trip are over.
Before bed time Daniel gave me his view on the television that he has seen quite a bit of in the last few days, "Daddy the problem with American telly is that it's sport or something dumb", a good point well made.
Looks like the fundraiser at Maharanis was a real success and many thanks to our friends who set the evening up, to everyone who attended, the restaurant, and of course Adey Swindells for filling in for me and doing a better job than I would have done.
Sunday, 6 June 2010
maharanis
Thank you to all who attended the fundraiser at Maharanis - it was fab!Thankyou to Farouq and his staff for their generosity towards Daniel. Special thanks to Adi (Swindells) you were a legend!!!It was a lovely evening and there were lots of laughs. Thanks for all your support. J&A
Saturday Post Op day 4
Daniel has been a bit more alert today although he is still weak and tired as would be expected. He is a bit more like his normal self today and has stayed awake all day.
This morning he had a physio session that mainly involved stretching his legs but he also managed to sit at a table and play with some toy dinosaurs. In the second session this afternoon he knelt at a bench and did some writing in foam on the bench top. He did some assisted crawling and pressing with his legs and even managed to spend 15 minutes touring the hospital on a tricycle!
The physio suite has loads of good kit and the therapists seem friendly and well motivated, and I think Daniel has been surprised that the sessions so far have been varied and relatively good fun.
Daniel's recovery is going according to the detailed plan and we will be discharged from the ward tomorrow (Sunday) after which we will be staying in a hotel for the duration of our time here.
This morning he had a physio session that mainly involved stretching his legs but he also managed to sit at a table and play with some toy dinosaurs. In the second session this afternoon he knelt at a bench and did some writing in foam on the bench top. He did some assisted crawling and pressing with his legs and even managed to spend 15 minutes touring the hospital on a tricycle!
The physio suite has loads of good kit and the therapists seem friendly and well motivated, and I think Daniel has been surprised that the sessions so far have been varied and relatively good fun.
Daniel's recovery is going according to the detailed plan and we will be discharged from the ward tomorrow (Sunday) after which we will be staying in a hotel for the duration of our time here.
Saturday, 5 June 2010
Post Op Day 3
After laying flat on his back since Tuesday Daniel started his physio programme today. In the morning I was shown how to move him from his bed to the wheelchair without hurting his back. Daniel spent half an hour in his chair and we went out on to the terrace garden on floor 8 for a few minutes and it was pleasant to be outside for the first time since Monday. He slept for an hour after due to the effort.
This afternoon Daniel was back in to the wheelchair for a short session stretching in the physio suite on floor 4. Although he was very wobbly and tired it was possible to see an improvement in his posture in the chair over just half an hour as we came back to floor 12.
Daniel was very uncomfortable afterwards and seemed to experience the most pain he has felt this week. He felt better after more painkillers but in typical articulate style he told me what he thought, "That physio gave me a gift.....bloody nothing!".
This afternoon Daniel was back in to the wheelchair for a short session stretching in the physio suite on floor 4. Although he was very wobbly and tired it was possible to see an improvement in his posture in the chair over just half an hour as we came back to floor 12.
Daniel was very uncomfortable afterwards and seemed to experience the most pain he has felt this week. He felt better after more painkillers but in typical articulate style he told me what he thought, "That physio gave me a gift.....bloody nothing!".
Friday, 4 June 2010
Post Op Day 2
Daniel has been awake much more today although he is still very tired, and he has been quite comfortable apart from a bad patch mid-morning. He has had to remain on his back and is looking forward to moving about a bit more on Friday.
He has watched most of two films and I have read two complete books to him, and so he hasn't been totally bored.
After eating just a bit of jelly earlier today, this evening he has got through chicken noodle soup, mashed potatoes, macaroni cheese, a bread roll and a chocolate pudding - he must be feeling a bit better!
He has watched most of two films and I have read two complete books to him, and so he hasn't been totally bored.
After eating just a bit of jelly earlier today, this evening he has got through chicken noodle soup, mashed potatoes, macaroni cheese, a bread roll and a chocolate pudding - he must be feeling a bit better!
Thursday, 3 June 2010
Post Op Day1 Evening
Daniel has been moved up to the general ward on floor 12 now. We have our own private room with a bathroom, and now at 7.30pm it is also very quiet as well.
Daniel has slept for most of the day but he was awake for about an hour in the middle of the afternoon. He managed to eat a cracker and some apple juice - hardly a feast but very good progress at this stage.
The nurse said that Daniel is doing better than the average rhizotomy patient, and she concluded that "he is doing awesome". I love the way these guys put their point across.
While I was making Daniel comfortable in bed this afternoon (he has to be on his back continuously) I felt his left foot and it felt so much more loose and easy to move up and down at the ankle than before the surgery. That's what we're here for - so far so good!
Daniel has slept for most of the day but he was awake for about an hour in the middle of the afternoon. He managed to eat a cracker and some apple juice - hardly a feast but very good progress at this stage.
The nurse said that Daniel is doing better than the average rhizotomy patient, and she concluded that "he is doing awesome". I love the way these guys put their point across.
While I was making Daniel comfortable in bed this afternoon (he has to be on his back continuously) I felt his left foot and it felt so much more loose and easy to move up and down at the ankle than before the surgery. That's what we're here for - so far so good!
Wednesday, 2 June 2010
Post Op Day 1 Morning
Daniel is continuing to do very well this morning, and in fact most of the time he is asleep. He is waking from time to time but normally only for about 20 minutes.
He has to lie flat on the bed all the time but I have even managed to feed him some jelly; I didn't expect him to eat so soon.
We have been told that Daniel will be moved out of PICU today in to the general ward, although we are in no hurry as at the moment we have a pleasant room with a sliding door to keep it quiet and Daniel is getting plenty of good rest.
He has to lie flat on the bed all the time but I have even managed to feed him some jelly; I didn't expect him to eat so soon.
We have been told that Daniel will be moved out of PICU today in to the general ward, although we are in no hurry as at the moment we have a pleasant room with a sliding door to keep it quiet and Daniel is getting plenty of good rest.
Tuesday, 1 June 2010
A Good Day
After arriving at the hospital for a very early check-in it was about 7.30am by the time Daniel went into theatre. He had been given a sedative and seemed drunk as I kissed him goodbye.
I was updated by an internal phone every hour and all went smoothly, and I was able to meet him in the recovery room at about 11.30. Just before that I saw the main surgeon Dr Park and he said that it had gone very well, and we had the added bonus that he came in as I was talking to Jo on Skype, and so she was able join in the conversation as well!
I had a quick chat with Daniel before he was moved in to PICU, the intensive care ward. He watched TV for a few minutes and said "Daddy I feel back to normal" and then promptly fell asleep.
He woke later and described his condition as "comfy" The nurse asked him how painful his back felt on a scale of one to ten, with ten being the worst. Daniel replied "zero".
He should sleep through tonight and quite a lot of Wednesday. I don't think he quite realises how many tubes are 'plugged' in to him, but he is doing very well and all the staff have enjoyed treating him due to his good attitude. Danny boy has shown them what True Grit really is!
I was updated by an internal phone every hour and all went smoothly, and I was able to meet him in the recovery room at about 11.30. Just before that I saw the main surgeon Dr Park and he said that it had gone very well, and we had the added bonus that he came in as I was talking to Jo on Skype, and so she was able join in the conversation as well!
I had a quick chat with Daniel before he was moved in to PICU, the intensive care ward. He watched TV for a few minutes and said "Daddy I feel back to normal" and then promptly fell asleep.
He woke later and described his condition as "comfy" The nurse asked him how painful his back felt on a scale of one to ten, with ten being the worst. Daniel replied "zero".
He should sleep through tonight and quite a lot of Wednesday. I don't think he quite realises how many tubes are 'plugged' in to him, but he is doing very well and all the staff have enjoyed treating him due to his good attitude. Danny boy has shown them what True Grit really is!
Bravest boy in the world
Just a quick entry to tell you that the surgery has been completed today and has gone to plan. Daniel will be in PICU for 24 hours and then all being well taken to the general rooms sometime tomorrow. We have had so many emails and texts today and yesterday wishing us well - thankyou it really helps keep the 4 of us going. Daniel has been an absolute star today and approached the surgery as if he had a job to do. We are so proud of you Danny boy, get well soon XXXXX
Subscribe to:
Posts (Atom)
