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.
Monday, 31 May 2010
Treatment
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.
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
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.
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
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!
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!
Saturday, 29 May 2010
Thank you
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.
Friday, 28 May 2010
Physiotherapy Evaluation
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.
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.
Thursday, 27 May 2010
Hampton Vale Cream Teas
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
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!
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
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
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
Tuesday, 25 May 2010
First Time at the Hospital
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!
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!
Sunday, 23 May 2010
Blast Off
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.
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.
Thursday, 20 May 2010
Final Preparations
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!
May the force be with you Danny boy!
Fund Raising Events
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.
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.
Thursday, 6 May 2010
Daniel's condition and how we are going to help him
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.
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.
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