Step by step with Daniel

New Year

2012-01-01T10:26:00.002Z

Happy New Year to everyone, sorry we have been a while updating the blog, Daniel's been very busy!

Daniel is still progressing well and working very hard. He finds the physio and treadmill frustating at times and it is sometimes better to let him rest than try to persuade him otherwise.

His strength and endurance have continued to get much better to the extent that he can now walk to school with his sticks and then walk home at the end of the day.

He is now beginning to take the scarier option of cruising around the house and taking steps between doorways, rather than using his sticks. We seem to be moving on with his balance a little more and he can now walk around with just a hand on a wall - depending on how tired he is!

We recieved a reply from St Louis regarding a progress dvd we sent. This has spurred us on and given us a great lift that we are moving in the right direction. They were "amazed" at the progress he has made and realise the hard work and juggling Daniel is putting into physio and school work on top.

It is important for us to review where Daniel would be now without the SDR. He would now be firmly confined to a wheelchair and the frame would probably be a distant memory. He was struggling to walk 100 metres with his frame, there was no chance of walking with sticks. He was in pain and couldn't straighten his legs at all - this has been cured.

This day last year Daniel could only do 20 steps with his sticks, now he walks as far as he wants, hopefully we get the same improvement this year.

Another Thank You

2011-09-04T19:21:00.002+01:00

We would just like to say thankyou to whoever donated 2 different sums of money since the end of March. They are significant amounts and the bank cannot give us details of who has transferred the money to Daniel. Every penny will continue to be ploughed into Daniel's intensive physio, as he will require this for many years to come. Thankyou again the photos show how much you have helped so far.

Thankyou to Hampton Church

2011-08-30T12:08:00.001+01:00

We have received a cheque from Hampton Church for Daniel's fund whose followers have generously donated £400. Thank you all very much it was a complete surprise, the money will be used to continue with Daniel's on going physio which currently costs us £48 an hour.

We have at last had a family holiday and spent a lovely week in Denmark. Previous holidays have had the car virtually full before we started packing, with Daniel's wheelchair, so it was lovely to be able to just throw his sticks in the back!

The frame was taken along too in case he got tired. He didn't get tired and insisted on walking everywhere with his sticks which has shown us how much strength and stamina he has built up since using them first time in January.

Things people take for granted like walking on a beach were a nightmare before SDR, the sand used to get stuck in the frame wheels and we had to carry him, now he just walks on like anyone else. Daniel also reached another milestone and swam his first length!!

It was good to see him experimenting - without us nagging - trying to walk with one stick.

Carrying on doing what he's doing

2011-07-22T15:30:00.002+01:00

Daniel is continuing to do his weekly regime of physio and has just finished another week of intensive physio. He is working very hard building up those muscles. Whilst at physio he has now been trying to walk just with one stick. This will eventually be much better for him and more functional as he will also be able to carry things! He managed very well until he got carried away and tried to go very fast! Now with the summer holidays here it has been lovely to see Daniel and his big brother going out to play, he has used his frame on these occasions to be safe away from grown ups. We couldn't let him out to play alone before the SDR as he couldn't walk very far and couldn't get up to standing himself - lovely to see him being independent.

One Year On......

2011-05-31T20:29:00.004+01:00

Daniel had his operation one year ago today, and he has put in a lot of hard work and made huge gains in that time.
His posture has been permanently improved, he can get his legs straight and his feet flat on the floor, and he tells us he doesn't have pain any more.
He will have to continue his intensive physiotherapy to carry on improving and building strength.
As a family we are thrilled with Daniel's progress and we are pleased to have had the opportunity and support to go ahead with the surgery.
Well done Dan!

No wheels required!

2011-03-20T20:05:00.005Z

Daniel continues to work very hard and is really enjoying using his walking sticks rather than his frame.

Final Fundraiser with Athenry

2011-02-27T07:55:00.003Z

Last night our friends Lynn and Shaun organised a fundraiser with band Athenry at the British Legion in Yaxley. They told us that they would do everything to organise the night and they were true to their word! Shaun had managed to set up a 'before and after' dvd so that we could clearly show Daniel's wonderful progress and this was shown halfway through the night, while the band had a break. There was also a raffle and again Lynn and Shaun had arranged everything and found some wonderful prizes, including a diving experience and an off-roading day. There were also prizes donated by various businesses in Yaxley and Huntingdon, thankyou to you all we will be sending thankyou letters very soon! The band were fab and played up until midnight, they also gave their time for free, as did the British Legion.
This was our last official fundraiser and Lynn and Shaun raised £800 for Daniel. Overall we have raised £22,000 and together with our own savings have paid for Daniel's treatment in America. Thankyou to anyone who has donated, given their time and supported Daniel and ourselves during our fundraising over the last nine months. You have all been fantastic and have helped us change our son's future for the better. We will continue to update the blog so please keep checking his progress.

Well Done the Posh!!!

2011-02-19T19:55:00.002Z

Today Daniel was invited by the Free Kicks Foundation to be a mascot for Peterborough United football team. We met up with Simon who was to be looking after the mascots for the afternoon. He showed Daniel and the rest of us around the inner workings of the football club and Daniel got to meet the players in their dressing room and get his programme signed. Then it was time for Daniel to do his warm-up with Simon and the other mascots on the pitch. Daniel used his frame today because it was pouring with rain and he was worried he would slip, he worked incredibly hard keeping up with all the exercises and even dribbled the ball in between some cones which just looked amazing to us. He couldn't kick a ball before his SDR operation but he seemed in control of the ball and kicked with both left and right feet. Simon was brilliant and we want to thank him for how well he enabled Daniel to join in. After the warm up Daniel led out all the players and officials onto the pitch for the match, he absolutely loved it!
We would like to thank everyone who we met today at the Posh ground they were so friendly, but particularly Simon and of course Steve and Sam from Free Kicks Foundation for giving Daniel (and ourselves) a great afternoon. By the way they won 2-1!!

Walking walking walking

2011-02-06T20:00:00.002Z

The title of this post sums up what Daniel is doing alot of. This was Dr Park's mantra when he saw Daniel in consultations and said that the way for the kids to progress the best was lots of "walking, walking, walking".
It has only been recently that Daniel has had the confidence to walk a few steps with his sticks but over the last week he has really taken off. We went out to the park today and Daniel said he didn't want to take his frame, just his sticks.(sharp intake of breath from both parents)This is what is so amazing about the effects of the operation, we used to have to take the wheelchair for when he got tired in his frame (which by the way has been gathering dust since September).Now we seem to be taking the frame for when he gets tired in his sticks. The best thing of all is that Daniel is so proud and happy with himself.

Bee in his bonnet

2011-01-26T22:03:00.002Z

Well we really don't know what's got into Daniel at the moment but he seems to be excelling in everything. This week he got a commendation from his headteacher for a piece of written work that he did regarding his topic of the UN, he has now decided that he must do the hardest spellings and he is getting 10/10. It is noticeable since the SDR that he has become much happier and relaxed with his schoolwork is acheiving much more - well done we know you are trying hard Daniel!
By the way Daniel is only using his frame at school at playtime and to get to his classroom - the rest of the time he is on his sticks and confident! At home he is using his sticks where he used to crawl and commented yesterday that he had never walked on the upstairs carpet until this week.
He is using his sticks more than he is using his frame now - it's brilliant!!

New Year new goals

2011-01-09T20:10:00.002Z

After a few weeks dealing with various illnesses Daniel has started the new year with a positive, energetic attitude. He has become very proficient with his walking frame and feels he is "just dragging it along with him". His legs are lovely and straight and he is able to walk really long distances. Now Daniel is moving onto the sticks, and since new years day he has been using them every day.
Prior to the operation Daniel managed 4-5 steps with his sticks in the lounge with almost no balance. This week he has walked with his sticks indoors and outdoors, achieving distances of up to 200 metres at a time. Today we have had our first frame-free day and he seems to have taken the bull by the horns and is walking continuously with sticks around the house and outside. This is such a breakthrough for him as he is not asking for someone to be with him all the time, he is just pottering alone. He is finding that by using his sticks he can more easily negotiate tight spaces than when he is using his frame.

Merry Christmas from us all

2010-12-24T15:30:00.002Z

Just to say a huge thankyou and merry christmas to all our family and friends, and the many new friends we have made through this very exciting year.
This time last year we had no idea that there was anymore we could do for our son, now we have done all we can to make him comfortable and much more independent for the rest of his life.
Best wishes to all the children and their parents who have gone through this process this year, anyone for a nice quiet year next year?XXXXXXX

List of Winners

2010-12-06T16:00:00.002Z

Here are the winning numbers for Dan's draw:
1st - 0458 2nd - 0684 3rd - 0794 4th - 0679 5th - 0623
6th - 0629 7th - 0622 8th - 0176 9th - 0986 10th - 0778
All winners have been notified - thankyou all again X

Big Thankyou

2010-12-04T19:31:00.002Z

A very big thankyou to all at Hampton Vale Primary who have supported us over the last 6 months. Daniel's prize draw was held on Thursday with 10 winners in all. We raised a large amount of money with this event so thankyou to anyone who bought a ticket. We had 10 great prizes donated and want to thank Tina, Lisa and Helen and Mark particularly.
Thankyou also to all our friends and family who sold some of the tickets for us we really have appreciated all your help - we hope we can help you all with something sometime!!
Daniel is doing great and each time he walks unaided at home the strength seems to be building. This little man is full of determination and puts the rest of us to shame. Well done Daniel XXX

Spread the word

2010-12-01T18:45:00.002Z

Adrian had an early morning call to make on radio Cambridgeshire this morning. The aim of this was to get the information about the SDR procedure out to as many parents/grandparents as we can. We found out about this operation purely by accident and it would be a shame if people missed out just through a lack of information on the NHS part. There are so many children that could be helped by the SDR.
Daniel and his brother Adam were very proud of their dad this morning (so was mum). If one other extra person hears about this it will be worth it!

Steady Progress

2010-11-24T19:49:00.002Z

Daniel has been continuing his hard work, and he is even doing 20 minute treadmill workouts before school on three days of the week!
He has been doing lengthy walks while using his frame, and managed to get around Twycross zoo for a day out without using his wheelchair - something that would not have been possible for him prior to the surgery.
He is gaining confidence in using his crutches outside, and he has walked nearly to the end of our road and back to the house with them.
Daniel is also regularly trying his unaided walking in the house, and he is enjoying the challenge of learning to balance as he repeatedly takes a few steps across the living room.

New shoes

2010-11-11T12:18:00.003Z

Daniel has been working so hard with his physio and progressed so well we had wondered if we could be doing anything else. We have contacted Dr Park's team and they are also really pleased with his walking. They have given us a few more suggestions to move Daniel on and continue with his strengthening. This will involve much more time on his sticks and trying to "cruise" between furniture. Daniel will probably find this all a bit overwhelming at first but we know how hard he works and how determined he is with any new challenge. They have also said that he can now start the transition to just using insoles in his shoes and getting rid of the splints - he will be so pleased to do this. It will mean that for the first time ever Daniel will be able to choose a pair of shoes and not just have a pair that will fit over his splints!

Contact details

2010-11-03T07:58:00.002Z

Thank you to the person who enquired if we are still fund raising.
If you would like to contact us directly, my e-mail address is
a.paice1@btconnect.com.
Regards Adrian Paice

Stronger and stronger

2010-10-28T15:59:00.002+01:00

Where is the strength in Daniel's legs coming from we keep asking ourselves. He has over the past two weeks walked with his frame for miles - literally. Before the SDR operation he was only able to walk to the end of the road and back and was very tired, now things are becoming very different. We have been able to go out for the day without taking the wheelchair with us as Daniel just doesn't seem to get very tired. He seems very happy that he can walk such a long way and it is making life easier for all of us. He is doing so well and we are seeing the results of the SDR in all sorts of ways.
During the week before halfterm he took his sticks into school and walked with them to the dinner hall and back 3 times in a day - this had been a target to acheive by Christmas but he beat us to it!

Bag Pack Team

2010-10-16T20:04:00.002+01:00

We have had a lovely day today, we have been working hard on a bag pack at Bretton Sainsbury's. Lots of our friends came along to help us and we all managed to raise over £1000 in 4 hours. Thankyou to all who donated their time as this amount would never have been acheived without the number of people helping. All the staff at Sainsbury's were lovely too and we would like to thank them and their customers for all their support today.

Busy weekend - but loads of fun

2010-10-10T18:37:00.002+01:00

This weekend saw the quiz night for Daniel. We really could not have done this without the help and support of our friends Jayne, Spencer, Lynn, Adey and Lisa. Spencer was quiz master for the night and did an amazing job. All the people who attended seemed to have a great night and we were pleased to see everyone enjoying themselves. We had so many friends who came and supported Daniel on the night and would like to thank you all. The night raised just under £800 with a raffle, and heads and tails game arranged by Adey!
Today we have again been very busy with the Great Eastern Run - fun run that is! We have a few people who were kindly running the full half marathon for Daniel's fund and so wanted to show our support for them. Adrian pushed Daniel most of the way in his wheelchair whilst mum and Adam ran by their side. Towards the end we arranged for our friend Jayne to meet us to swap Daniel onto his frame. He proudly walked tall and strong over the finish line to receive his medal! He then walked with his frame all the way back to the car which was a 15 minute walk. We have been amazed over the past 2 weeks at the sudden strength and stamina that Daniel has - which wasn't there at all before the operation. It seems by taking away the spasticity Daniel is much less tired and can just get on with his life!

Friends and a long week

2010-10-01T19:54:00.002+01:00

At the weekend we all met up with two families who were in St Louis at the same time as Adrian and Daniel.This was lovely for mum to meet everyone in the flesh who the boys had been talking about. Daniel seemed really pleased to see Ellie and Franscesca and it was lovely to see them all together (was also lovely to meet the parents!)
Daniel has been busy this week doing the treadmill 3 times for 20 minutes, and has been booked into intensive physio all week. He hasn't been too happy about the physio but unfortunately it is crucial for now and probably the rest of his life!
At the physio he has been able to walk confidently with his sticks and to stand unaided for longer periods of time. We are very proud of all the work Daniel is putting into his recovery.
*Quick thankyou to Abbey Corrugated for their kind donation of vouchers to be used for raffle prizes at Daniel's quiz night.

Slowly but surely

2010-09-23T20:04:00.002+01:00

Daniel is gaining strength on a daily basis. At the weekend after walking for 15 minutes on the treadmill he insisted on walking a significant distance in some woods on an afternoon out.Sometimes he seems as though he has lost all confidence and drive, and others he is strong and determined. He has begun walking at home with sticks, and he looks very tall and strong - almost as if you could take them away - but we won't.
Today Daniel gave us another surprise and walked 7 steps unaided in the hallway at home - this is also significant as it doesn't have carpet for a softer landing!

He did it!!!!!!!!

2010-09-10T19:44:00.003+01:00

We have had the greatest day! Our fantastic son has just walked totally unaided 4 steps across the lounge!!!!! We are so proud of him, he has been so brave and tried so hard at all his physio and now we are finally seeing the results of the SDR. A huge thankyou (just doesn't seem enough) for all the support and donations that we have received - Daniel really wouldn't have walked today without the SDR operation. Daniel has also managed to stand for 5 seconds unaided in the shower today, we really are on a roll!We can't wait to see what other surprises Daniel has in store, it really feels a case of watch this space.....!!!

Keep going Daniel!

2010-09-01T13:40:00.002+01:00

Daniel has continued to strengthen up over the past week, mainly due to his hard work and our nagging! The treadmill has been a real hit and Daniel tries hard to walk as fast as he can on it seeing it as a challenge to enjoy rather than give up. His physio has said just 10 minutes a day is enough for now so that he doesn't wear himself out but Daniel has insisted on doing 12 minutes and we are not going to argue! He will be starting swimming lessons next week which will help improve his strength overall. Daniel has noticed many changes to his body since the operation, feeling much "looser and bendier" was one description - and although it is taking time to regain his strength he looks a different person when he is in his frame walking down the road.

Back of the net!

2010-08-23T22:26:00.003+01:00

The Hampton Swans versus The Posh Legends football match took place on Sunday 22nd and was a great success.
Thank you to all at Hampton Sports FC, especially Lee and Jaime for all their hard work and effort in organising the event.
Big thanks to all of the players who were a really nice bunch of guys and very generous too.
Thankyou to all of the kind people who helped out on the day and also in the preparation, and also to everyone who turned up and supported Daniel on the day.

Treadmill

2010-08-23T22:13:00.002+01:00

Daniel has been given a treadmill and a rower/cycle machine to use for part of his physio. These were very kindly donated for free by someone who no longer had use for them.
On the first day Daniel did 10 minutes on the treadmill in the morning, and then in the afternoon he asked to go on again and did another 20 minutes. After this he did 5 minutes on the rower to finish off!
Thanks very much to David and Linda for sourcing the equipment for Daniel.

Slippers.....

2010-08-17T19:32:00.002+01:00

Slippers, these are an everyday item in most homes including ours. The only difference was that Daniel never had any because they just fell off his feet as soon as we tried to put some on. That is until yesterday. Daniel thought that now he had had the operation he might at last be able to wear some. We went to the shop and YIPPEE for Daniel he could at last wear slippers and keep them on. He is so pleased and proud of his first ever pair of slippers and it was actually quite an emotional event being able to buy them for him. Thankyou all!!

Beautiful effort from Beautiful You!

2010-08-12T15:36:00.004+01:00

Danni and Jane at the Beautiful You Salon in Hampton Vale have had an extremely good opening week of business and at the same time selflessly raised funds towards Daniel's surgery. Every customer was given their treatment for free during the promotion, but instead they were asked for a donation for Daniel.
This was an amazingly generous act from the team at the salon and we would like to thank them sincerely.

Go Danny Boy!!

2010-08-05T17:38:00.002+01:00

Daniel has spent the week doing intensive physio, which he hates as it is tedious and tiring for him. As usual though Daniel has just gritted his teeth and got on with it. This has been part of his life since he was 3 and will probably continue for a long time to come. Quick moan to the NHS who don't offer this vital treatment (or pay for it!!)
We today popped in to see nanny and grandad benji and I asked Daniel to stand up holding his frame to show them how lovely and straight he now is. Daniel stood up - but then let go of his frame and stood unaided!! FIRST TIME EVER!!
He just couldn't stop laughing, it was as though he was keeping it a secret until he was sure he could do it. He was able to stand lots of times for 5-10 seconds and each time enjoyed throwing himself back onto the chair when he had had enough. We are really proud of you Daniel and can't wait for more to come. Thankyou to all who have donated so far the above would not have happened today without the operation in the US.

Beautiful You!

2010-08-02T20:10:00.002+01:00

We really would like to thank Dani and Jane at Beautiful You Salon, they are running a promotional week starting today with their proceeds going to Daniel's medical fund.(see the link by sponsors) We met today for the first time and they made us feel so welcome and supported, and I even had my nails done!! Thankyou so much for your kindness X

Keeping going

2010-08-02T20:09:00.000+01:00

Daniel has worked hard the last couple of days to keep up with his exercises and to take time out on his bike. We have been enjoying watching him get stronger with more stamina over the week. On Thursday - with the promise of sweets he walked with his frame to our local shops and almost back home, he couldn't get near to this last week!
Daniel has been enjoying admiring himself in the mirror in the bathroom, before the SDR he struggled to stand straight enough and long enough against the sink. Now we have noticed how much time he is standing there holding on but only gently - and wow does he look straight. Those bones are going to have a better quality of life from now on!
Our day out on Friday with Lizzie and Simon saw Daniel trying hard to impress, he stood with his frame and let go waving his hands in the air - he was pleased that only "a little of my t-shirt was against the frame holding me up!" We were very pleased, he now seems to be gaining some confidence in himself at last - watch this space.....

Safety First!!

2010-07-26T15:02:00.003+01:00

Daniel has continued to build up his strength over the past week, he has been left still quite weak from the surgery (as expected) and so is doing exercise little and often. Today we went out on our longest bike ride since the surgery and Daniel seemed to be enjoying the freedom trying to go as fast as he could. We rode for around half an hour and during this time Daniel informed me that since the SDR surgery he could now brake with BOTH hands.He was very pleased with this - so was I!!
Safe journey to Francesca who will be returning from her adventure in St Louis this week - we look forward to meeting up.

Darts Fundraiser

2010-07-25T19:45:00.002+01:00

Thank you very much to Zoe Warner & Drew Salter who recently organised a darts tournament as a fund raiser for Daniel.It was a brilliant effort to raise over £250, and many thanks to everyone who took part.

Daniel's Progress

2010-07-17T12:23:00.002+01:00

Daniel is continuing to strengthen up and his legs are now a bit more comfortable where his hamstrings and heel tendons were cut. Last week he struggled to walk with his frame outside the house for twenty steps, but this week he has reached the end of the street and back which is about 100 metres. It is easy to forget that it is only just over two weeks since the last surgery, and so the recovery is going as well as we can expect.
I asked Daniel how he thought he was getting on and he said, "I'm getting on just fine".

Swans v. Posh Legends Football Match

2010-07-10T10:48:00.003+01:00

The Hampton Swans football team have kindly organised a football match against a Posh Legends team to help raise funds for Daniel's treatment.
The match will take place on Sunday 22nd August at 2pm, and will be played at the pitch at Beaumont Way, Hampton Hargate.
Special thanks to both teams for taking time out to help us - we really appreciate your efforts.

Summer Supper

2010-07-10T10:38:00.002+01:00

On Wednesday Daniel's school hosted the Summer Supper and it was great for Daniel to be able to attend a fundraiser after being away. The entertainment was provided by Miss Swingler on guitar and Mrs Yeeles who showed us how well she can sing (very well!)and so big thanks to both ladies. Thank you also to all of the staff and parents who provided the barbecue and refreshments and helped out. Finally thank you to all of the families who turned up for the event which was a sell out.

Home at last!!

2010-07-05T08:17:00.002+01:00

It was wonderful to all meet up again at Heathrow Airport on Saturday morning. It seemed such a long time ago when we had gone our separate ways on May 23rd - but was well worth all the hard work so far. Daniel is still recovering from the tendon release and so only walking very short distances at the moment, and getting very tired in the meantime. Hopefully by the end of this week he will be a bit stronger and ready to attend school.
We would like to thank everyone who has supported us over the last two months we really appreciate all the hard work and help. We will continue to update the blog but every few days now. See you all soon X

Final Night

2010-07-02T03:24:00.002+01:00

We saw Dr Park this morning and he was pleased with the range of movement in Daniel's feet and legs following the surgery on Tuesday. He would like to see a video of Daniel's mobility in six months, and said that ideally he would like Daniel to return for follow-up in a year. He advised on how we should help Daniel's progress and one of the main things is, of course, "lots of walking".
Daniel has been off of his feet since the surgery on Tuesday and his tendons and hamstrings are still sore, and so we headed into therapy afterwards a bit apprehensively . Michael the therapist stretched Daniel's legs and within minutes the extension and straightness that could be achieved in both legs was already significantly better than before. It appears that the lengthening procedure has been very successful, and Daniel's flexibility will continue to improve through regular stretching.
Later in the session Daniel did some standing from a seated position while he was supported by Michael, and he also stood up for as long as possible with his hands positioned on a bench in front of him.
On Friday we have therapy again at 8am and we fly out in the sfternoon.

To the casual observer Daniel's mobility now may not look radically different to six weeks ago, but in fact there have been major positive changes from both operations that have got him to a state where he can make really big improvements in mobility as he gains strength. He does not have the involuntary tightness in his legs that he had before, and his feet and legs have a much greater range of movement, which is critical to smoother and more comfortable walking. He is using his leg muscles in a different way now and as they strengthen over a few months it will be extremely interesting to see what Daniel can achieve.
Jobs a good 'un - we're outta here!

Out of Hospital

2010-07-01T03:23:00.003+01:00

Tuesday night was comfortable for Daniel and we were discharged from the hospital late on Wednesday morning. He has 4 bandages on his legs, on the inside of his thighs just above knee height, and on both heel tendons at the base of his calves. He currently is comfortable when sitting but he has not put his weight on his legs yet.
He was able to go to the evening meal in the hotel tonight in his wheelchair and that was good for his morale.
Although Daniel has a lot of work to do for a full recovery it is great to get the final surgery completed without any problems so far. The pain in his legs should ease over a few days and I think he'll forget about it when he sees his mum and brother on Saturday morning.

Surgery Complete

2010-06-29T17:51:00.005+01:00

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.

Pre-op day

2010-06-29T02:24:00.006+01:00

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.

Last Weekend in St. Louis

2010-06-28T03:23:00.005+01:00

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.

A very good friend

2010-06-26T15:53:00.002+01:00

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

St. Louis Calling, At Last

2010-06-25T19:47:00.010+01:00

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).

Technical Issues and Dr Park

2010-06-23T09:06:00.002+01:00

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!

Go Cardinals!

2010-06-21T03:41:00.004+01:00

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.

Best dad in the world

2010-06-20T19:07:00.002+01:00

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

Friday

2010-06-19T02:30:00.003+01:00

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!

Thursday

2010-06-18T01:22:00.003+01:00

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.

Wednesday

2010-06-17T02:01:00.003+01:00

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!"

Tuesday

2010-06-16T01:15:00.002+01:00

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).

Monday

2010-06-15T01:13:00.002+01:00

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.

Awesome Bike Ride Dudes!

2010-06-14T01:23:00.003+01:00

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.

Friday

2010-06-12T00:54:00.002+01:00

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.

Thanks from St. Louis

2010-06-11T18:03:00.003+01:00

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?

Thursday

2010-06-10T23:21:00.003+01:00

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!".

Fundraising

2010-06-10T13:17:00.002+01:00

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

2010-06-09T22:50:00.002+01:00

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.

Tuesday

2010-06-09T01:50:00.002+01:00

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.

Outpatient Therapy

2010-06-08T02:45:00.003+01:00

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.

Out of Hospital

2010-06-07T01:16:00.002+01:00

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.

maharanis

2010-06-06T22:11:00.002+01:00

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

2010-06-06T00:59:00.002+01:00

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.

Post Op Day 3

2010-06-05T00:22:00.002+01:00

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!".

Post Op Day 2

2010-06-04T00:50:00.002+01:00

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!

Post Op Day1 Evening

2010-06-03T01:32:00.003+01:00

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!

Post Op Day 1 Morning

2010-06-02T16:43:00.002+01:00

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.

A Good Day

2010-06-01T23:43:00.002+01:00

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!

Bravest boy in the world

2010-06-01T20:58:00.002+01:00

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

Here we go!

2010-05-31T22:31:00.002+01:00

We are in our hotel room making final preparations for the morning. After our visit to the hospital this morning Daniel has a big black cross on his spine with writing across his back.
There is a thunderstorm rumbling away continuously this afternoon.
We are ready to go.
Daniel has been a really good lad this week.

Treatment

2010-05-31T02:43:00.002+01:00

Daniel has a fluoroscopic marking on Monday,and this will mark the exact spot on his spine where the surgery will be carried out, and this is just to save time on the day of the operation.
The main operation is on Tuesday and we have to be at the hospital at 5.45 am (11.45 am in the UK).
Thanks everyone for your comments on the blog, it's nice to be able to read them to Daniel.

God Bless America

2010-05-31T02:11:00.002+01:00

During our first week there have been a few examples of how warm and friendly people can be here.
When we arrived to check in at the hotel two ladies stopped to speak to Daniel and we explained why we are here. The next day the receptionist handed us a carrier bag containing some brand new toys that the two ladies had left for Daniel.
On our way walking through Forest Park to the zoo we paused to look at the map, and a guy stopped his car next to us and asked if we needed help,pointed us in the right direction, then waved and drove off.
An elderly guy walking towards us on the pavement gave Daniel a high-five, patted me on the shoulder, and then carried on his way.
Within the complex of hospital buildings one of the staff sitting outside on his lunch break asked if we needed help finding where we were going, and then he spent ten minutes leading us through two buildings to where we needed to be.
A few times this week we have spoken briefly to couples who have thrust their contact details in to my hand as we say good bye - they really seem to care how this all pans out for us.

Last quiet days

2010-05-31T01:34:00.003+01:00

Since our last hospital visit we have had three days with a chance to get out and about.
On Friday we returned to the Science Center and spent a few hours looking at completely different things from our previous visit. We saw a practical and amusing presentation about hot and cold and at the end Daniel got evaporating liquid nitrogen blown around his shorts; certainly the coolest he has been all week!
On Saturday we went to the zoo as there was plenty that we hadn't seen first time. Before the sea lion show started one of the staff asked Daniel if he would like to meet a sea lion afterwards, and Daniel excitedly said yes. As the audience dispersed at the finish the compere allowed Daniel and I through the fence to allow him to get his wheelchair next to the pool. The 250lb sea lion flipped out of the water and sat next to Daniel, and at the trainer's signal the sea lion rested his chin on Daniel's head!
Sunday's trip was to the Missouri Botanical Garden where they had life-sized model dinosaurs on display within the vegetation in a large dome-shaped tropical greenhouse. Daniel shouted at one of the larger dinosaurs, "Do you want a piece of me?" - he seems to be picking up the local language very well!

Thank you

2010-05-29T09:35:00.002+01:00

We would like to say a really big thankyou to all at Hampton Vale School this week. A great amount of money has been raised and Friday was no exception. The children made a big contribution with their penny pot maths day and the cup cake ladys - Mrs Set Tas and Mrs Caswell - thankyou to you for your generosity towards Daniel.

Physiotherapy Evaluation

2010-05-28T02:03:00.002+01:00

We had our second appointment at the hospital and this was to record Daniel's current physical ability. He had to do everything from rolling across the floor to walking upstairs holding hand rails, and everything was filmed.
Afterwards we had a tour of the different areas of the hospital where Daniel will be treated over the next few weeks. His main stay will be on floor 12 - this is one big building!
Daniel has been asking plenty of questions since, and he has been asking about anesthesia and why a boy on a bed had so many tubes connected to him. I've tried to reassure him with honest answers.

Hampton Vale Cream Teas

2010-05-27T17:03:00.002+01:00

Thanks to all who attended Hampton Vale School this afternoon for cream teas and lovely songs from the choir - conducted by Helen and Jodie! It was great to see everyone and to know that we have such alot of support from within the school, even the weather was kind!

Forest Park

2010-05-27T01:05:00.003+01:00

We have had two days without appointments and so we took the chance to explore some attractions in Forest Park, which we can walk/wheelchair to from our hotel.
Firstly we went to the zoo, where entry is free,and where even the zebras seemed to be trying to get out of the intense sun by sheltering under a few trees in their pen. We saw a Siberian Tiger and the information stated that it could eat 80lb of meat in one go, and this particularly interested Daniel as he had been weighed at the hospital the day before at 66lb!
Next day we went to the Science Center, which was also free to enter. The planetarium there was great as you could lie on mats in the middle of the room to watch the show. The imax cinema at the center showed a documentary about sea life and Daniel found the large hemispherical screen a bit too realistic at times; nearly jumping out of his chair at the sight of a close-up of those most scary of beasts, a cuttlefish!

Get Well Cards

2010-05-27T00:53:00.002+01:00

People have been kindly asking where to send cards to Daniel, and we are told that post should reach him at the hospital using the address below:

Daniel Paice (patient)
Saint Louis Children’s Hospital
One Children’s Place
St. Louis, MO 63110

They also have an on-line greeting system that seems quite straight forward to use:-
http://www.stlouischildrens.org/inTouch/FormGenerator.aspx?form_id=24&site_id=1&page_id=3067&major=1&minor=0

First Time at the Hospital

2010-05-25T12:15:00.002+01:00

Our initial appointment at the hospital went very well. The place is modern and clean with good facilities and the team involved in the SDR surgery are located together in a suite of rooms on the 4th floor. All the staff seem professional and focused but also friendly.
We watched a video presentation of the SDR which included a close up of the surgery being performed, and I don't blame Daniel for looking away from the screen!
We met the main surgeon, Dr Park,and he said that Daniel will be very weak for a few weeks after the surgery but may walk with his frame again before we come home. He said Daniel will reach his potential in about 2 years when he should be able to sit comfortably and upright, walk with crutches smoothly, and cruise around the house with no walking aids.
We met a man from Dublin whose son was near the end of the treatment, and he was full of praise for the hospital which was very good to hear!

Blast Off

2010-05-23T16:48:00.002+01:00

It was a difficult morning saying goodbye to mum and brother at Heathrow, and really felt like we were stepping in to something that we will be glad to see the finish of.
Daniel enjoyed his first plane trip, especially when the cabin crew handed out deep-pan pizza, and the airport staff looked after us really well.
On this our first morning here, we were both wide awake at 2am due to the jet lag. We are tired but looking forward to our appointment at the hospital Monday morning.

Final Preparations

2010-05-20T20:44:00.000+01:00

It has only been 4 weeks since the approval for the treatment from Dr. Park's team, but in that time the response from family, friends and the community has been amazing. Many people have made huge efforts to help Daniel on his way - we would like to thank you all. Daniel is flying out Saturday 22nd and is very excited to be travelling on a plane for the first time. He has always been a courageous boy and his mental toughness will help him through his time in the USA.
May the force be with you Danny boy!

Fund Raising Events

2010-05-20T20:17:00.000+01:00

Lots of people are giving up their own time to stage events for Daniel. Hampton Vale Primary School have backed Daniel's trip 100% and we would like to thank all staff and pupils, and in particular Helen Yeeles (Daniel's teaching assistant) and Raquel O'Connell, the school business manager. The school are running a number of events over the next six weeks to help raise money for Daniel's fund.
There are also some fund raising events planned within the local community:
Curry Night at Maharanis (sorry all seats are already taken)-Thanks to Lynne, Jayne & Lisa.
Sponsored bike ride around the Green Wheel organised by Graham Paice, on June 12th.
Quiz Night at Hampton Hargate School - date to be confirmed.
Non-uniform day at Hampton Hargate School on July 2nd - Thanks to head teacher Andy Lyons.
We know that there are lots of other people that are also raising money in their own way and we are extremely grateful.

Daniel's condition and how we are going to help him

2010-05-06T20:07:00.000+01:00

Our seven year old son Daniel is flying to St Louis in America for surgery. Daniel, who has been diagnosed with Cerebral Palsy, is having the surgery to permanently reduce the symptoms of the condition which inhibit his motor skills and in particular his walking.

After a difficult start in life Daniel has been left with difficulties with mobility as his Cerebral Palsy causes tightness and weakness in his legs and arms. He has been helped greatly by intensive physiotherapy sessions at the Cerebral Palsy Physiotherapy Centre in Bedfordshire and this has been sponsored by our generous friend and local businessman, Craig Fleming at Physio Supplies Limited. This physiotherapy has improved Daniel’s strength and flexibility, which has in turn helped him walk with a frame and even with crutches more recently.

By chance we found out about selective dorsal rhizotomy surgery, but unfortunately this operation is not available in the UK. We contacted St Louis Children’s Hospital where the operation is carried out on a regular basis, to see if Daniel was suitable. The surgeons have studied his medical notes and recent x-rays and videos and have said that Daniel is a very good candidate and highly recommend the surgery for him. After surgery they expect permanent results, with reduced tightness in his limbs that will aid easier movement for the rest of his life. Also his posture and balance will improve, and his walking will improve significantly.

Daniel and dad will fly out to St Louis in a few weeks time while mum and older brother will remain in England to ensure that overall cost is kept to a minimum. The treatment will cost us around £50,000. We have put all our savings in to the treatment, and have borrowed some money and already received some generous donations, but we are appealing to anyone who might be able to contribute to the cost. The operation really will be life changing for Daniel and the whole family.