Follow our Journey
  • Arrived in America 10th Feb 2012
     
  • Hotel is great, all the staff are kind & helpful
     
  • Visited St Louis Childrens Hospital on 13th Feb 2012 where we met the Great Dr Park.

     
  • Thursday 16th Feb 2012. Paige visited St Louis Childrens Hospital for her pre-op appointment. She was assessed & videoed by the physio department team prior to going to x-ray where they x-rayed the spine and marked her back with a large X where the operation will be carried out. Paige is being so brave as she has had to listen to everything that is going to be done prior and during the operation but dosn't want to show any signs of worrying but we know she is. What a brave and special daughter we have. Paige has to be at the Hospital by 10:30am US time on the 17th Feb 2012 and she will then go for her operation at 12:00pm US time that day.
  • Picture below Paige with new friend George at the hotel.

     
  • Day of Operation
  •   Friday 17th Feb 2012 Paige arrived at hospital for her operation. She went down to theatre at 1:00pm US time and we are being updated every hour while the operation is taking place. The operation is due to be complete by 4:00pm US time. The operation finally was complete at 5:00pm US time where Paige was taken to a recovery room and Dr Park visited us to let us know how it went. He informed us that the operation went well.
  • At 6:00pm we were allowed to go to the recovery room to see Paige.
  • When all the stats were stable we were then taken to floor 12. This is the floor where all SDR patients now come instead of going to the ITCU due to a break through in pain relief two weeks ago where a epidural is placed directly into the back.
  • Once Paige was settled into her room she was became very sick and dad was in the firing line.
  • Paige managed to get some sleep throughout the night but required additional pain relief due to discomfort in her legs.
  • Mum and dad managed to get a few winks throughout the night with all the machines bleeping and going off when the medication needed replacing. 
  • Post Op Day 1
  • Paige had some sleep and woke around 6;00am. She managed to eat a wofle & maple syrup for breakfast.
  • She had to lie flat on her back and was wired to various machines that provide the pain relief and medication constantly through out the day.
  • Every four hours Paige had to be turned on to her side for a period of time prior to being placed back on her back. This was quite stressful process due to it causing her pain.
  • As the day went on Paige's blood pressure became low and was constantly monitored by the good staff. The machines was constantly bleeping through out the day but we were reasured that everything was ok.
  • Paige struggled to get to comfy but managed as always to eat alot during the day. Enjoying chicken burger & fries with carrots for lunch and also lasagne, carrots, fries & chocolate cake for tea.
  • We all managed to get a little more sleep during the night due to the close monitoring by the staff and the madicines working. 

 

  • Post Op Day 2
  • Paige woke around 06:45am & once again had a good breakfast, (sausage, potatoes & pancakes).
  • At 08:00am Paige was seen by the Doctors who was pleased with her progress. The cafather was removed.
  • Paige became a little fustrated as she wanted to get up and not stay lying on her back for another day. But at 09:45am she went back to sleep for a good 3 hours. After she woke she seemed alot happier and started to be her normal cheeky self.
  • Paige's new friend George who had the operation a day earlier was able to visit her bringing her a lovely present to cheer her up. She was so glad to see George as she had been asking to see him sinse she arrived at the hospital.
  • Paige played on her Ipad and went on skyp to speak to her family in the UK. She was so happy to see and speak to everyone and also check on her animals.
  • She was a wake during the night and required more pain relief from the nurses to calm her down.

 

  • Post Op Day 3
  • Paige woke at 6am and was excited as this was the big day for her as she was going to get out of bed for the first time after the operation.
  • Physio were planned for two sessions starting with the first session at 9:00am, this was to help Paige out of her bed and also to teach mum & dad on how to do this on a daily basis until she was able to do it her self. The 2nd sesstion was at 1:00pm. Physio arrived and started to move Paige in to a position to be able to get her out of the bed and into her wheelcahir, as they started to move Paige she screamed out and started to cry in alot of pain so they had to stop with Paige sitting on the edge of the bed. Paige went white and started to be sick with the pain so dad ran to get assistance from the nurse who came and gave Paige more pain relief. Paige should have been given pain relief medication 30 min prior to her being moved, but was not. There was a error by the staff that caused her not to be given this medication in which the hospital admitted to. Paige was then transfered from the bed to her wheelchair where we then took her a walk around the hospital but had to return back to her room quickly as she was still being sick.
  • The next physio sesstion had to be delayed due to Paige not being well but continued later at 3:00pm. Paige put a brave face on and went to physio where she met Michael who was going to take her for her physio session. He was fantastic has he made Paige laugh and also built her confidence back in trusting him on her moving and pain levels assocaiated.
  • After a long day Paige went to bed but didn't sleep very well as she was very restless and shouted out that she was in pain. The nurses came and gave her medication that helped her relax and go back to sleep.
  • What a day we want to forget.
  • Post op Day 4
  • Dr Park did his rounds at 7am, he had already heard of  Paige`s pain medicine mistake.So had decided to put her on a stronger medicine to enable her to get out of bed today for her physio without reaccurance of yesterday.
  • At 10am we arrived at physio were we were shown Paiges stretching programme , this was for Paige to do daily at the hotel over and above her physio.The session went well with a small amount of pain,such a difference .Paige worked hard and with such determination.
  • We went back to the ward and Paige slept for 5 hours.
  • WELL DONE PAIGE. 
  •  Post Op Day  5
  • We all had a restless night asPaige had alot of leg spasms during her sleep, this is normal after SDR.
  • Paige ate a good breakfast of fruit and a bagel.. She loves the American breakfasts.
  • 9am was our appointment in physio today.We went through all the paperwork for Paige`s discharge with "Mad Mike"He is an amazing person.just as i had heard.
  • Even though Paige can`t  stand or has at the moment lost all her strength, she managed with support to do 5 mins on the tread mill.She also did some ball kicking.
  • We also got her night splints for her to sleep in so we can get a good stretch on her legs.
  • Back to the ward to collect our things, down to pharmacy to collects Paige`s meds,we were able to go back to the hotel.
  • How nice it was to feel fresh air on your face after 5 days in the hospital..
  • Back in the hotel we chilled.
  • We have a very long road ahead of us all, but with the determination Paige showed us today we will get there.
  • Post Op Day 6
  • How nice it was to sleep in a bed, after 5 nights in a chair.
  • We had breakfast, and went to physio at the hospital for 9am, today session was with Erica.
  • Paige did 10 mins on the treadmill with support and 10 mins on the multi gym.
  • She then road around the hospital for 15 mins on a three wheeler bike.Well done Paige you worked those legs well.
  • After returning to the hotel for a rest we visited the gym, Paige wanted to go on the treadmill and did 5 mins with dads help.
  • We got the shuttle to Down town. we had a lovely walk through City Garden and found a nice bar to sample our first American meal out.
  • Te weather today his lovely, sunny and 63.Since arriving in St Louis we have had a sample of all weathers.
  • Back to the room for Paige`s stretch`s to be done. 

 

  • Post Op Day 7
  • Paige`s physio time today was 11am, so we had time for breakfast and a chat with some of the other parent`s and children are going through this same journey,listerning to there story`s helps.
  • On our way to the hospital we seen some snow.
  • Erica was the physio today.As she started Paige on the tedmill she was very pleased with her.She did 10 mins at a faster speed than the session before,the multi gym and the bike.We were all pleased with the effort Paige put in.
  • She also got her standing from a chair and sitting back down, great to build her strength.
  • On leaving the hospital we got the metro to a resturant called the Cheese factory.Lots of parent`s had told us we must go.It sure lived upto what we had been told.
  • We met Vikki, James and George in the bar later in the evening, it was nice to see how George was doing as he had his operation the day before Paige.
  • This is along journey and it does help when we as parent`s can get togeither.
  •   Paige has tried hard again today and that is all we can ask.Her pain is getting better by the day.
  • Paige love`s America but is missing her dog`s.

 

  • Post Op Day 8
  • The weather is Sunny and cold today.As it is Saturday we have no physio at the hospital.
  • We started with Paige`s stretch`s and then she walked with support up the corridor in the hotel.
  • We went on shuttle bus to the science musuem, wich was very intresting.
  • Once back at the hotel time for Paige`s turn on the tredmill 6 min`s done.
  • That`s all for her to do today.Even though we need to work her hard, we also have to make sure we do not over do it.
  • Paige`s knee`s are now straight after the operation wich we hadn`t seen before , we are trying to  get her to lift her feet as she walk`s .
  • This is going to be a slow journey.

 

  • Post Op Day 9
  • We did Paige`s physio. as it`s Sunday and no physio at the hospital.
  • We had arranged to take Paige out for a few hour`s as you go a bit mad just staying in the hotel room.We met George and his mum and dad.
  • We got the shuttle to the ``Gateway Arch``,this is the nation`s tallest monument, reaching 630 feet.It has been standing for over 40 year`s.
  • While downtown we had a lovely meal out. lovely experience for the children. 

 

  • Post Op Day 10
  • We had Paige`s physio at 2pm today .With Micheal.There was quite alot of question`s we wanted to ask.So Paige did not have much time to do any physio.
  • We felt unhappy with what Paige had achieved.
  • We got a taxi with George`s family to Wall mart, so we could stock up on food.
  • On our return we all had a lovely tea.And with the day we had  gone through with Paige, i even had a glass of wine.
  • Tomorrow is anothier day so lets be positive.
  •  

 

  • Post Op Day 11
  • Weather warm today 64.
  • I wake feeling poorly, so Paul took Paige to her 10am physio at the hospital, 
  • Nicola could see Paige didn`t seem to happy to have to do the session,so asked her what she liked, Paige said music, so Nicola went and got a C.D player.Paige did side walking and back ward walking to music and really enjoyed the session.Paul was over the moon with how Paige had worked and said he could really see a change in her mental state of mind.....so may be we have turned a corner.
  • Good luck to George today, as he has his hamstring operation.
  •  

 

  • Post Op Day 12
  • Paige had physio at 4pm today with Beth.She did free standing,stood from a chair on her own.She stood with support and throw a ball into a net.This was all to build the muscles that have never been used, due to the tightness before the SDR operation.The main one that is very weak is her Glutous Medius(in her buttocks)as this is extremly weak and is causing the most problem with balance and support.
  • Paige enjoyed her session and worked so hard.
  • We had tea with George and his famiky on the return to the hotel.
  • Paige was quite poorly during the night first being sick and then very bad spasms in her leg`s.
  •  

 

  • Post Op Day 13
  • We were up early today, as physio was at 9am.
  • There had been storm`s all over St Louis during the night,Lucky there was only structure damage near to us, but a few mile`s away there had been a tornado wich killed about 6 people.Makes you realise how lucky we are with our weather back home.
  • Erica was Paige`s physio when we got to the hospital.She was pleased when she saw Paige`s walking, pushing her wheelchair.Erica worked Paige very hard.Walking on the tredmill, standing , getting her balance on a ski board, wich Paige found very hard, balancing on one knee with support.Paige gave the session her all.and was sweating well at the end.
  • We had to go to floor 2 and collect Paige`s new splint`s, wich she need`s to wear everyday, they only come to her ankle`s and look alot better than the one`s we have had from England.We also have night splint`s thatgive her a good stretch while she is asleep.
  • We met George and his mum and dad to go to the Budweiser factory for a tour of how the beer is made.We all found it very intresting, and the free sample afterward`s was lovely.Paige got a ball from the Budweiser shop, we thought we could use it in the hotel room as part of her physio.
  • We walked Downtown afterward`s ,was told it was only 9 block`s from the factory.It took us over 90 min`s
  • We all had tea in T G I`S. very nice.
  • George and Paige did 5 min`s on the tredmill when we got back to the hotel, there own idea. 

 

  • Post Op Day 14
  • We awoke to a thunder and lightening storm at 6am .There has been hale stone`s as large as golf ball`s in some part`s of the town.And untill 11am the whole of St Louis was on a weather alert.
  • Physio was at 10am with mad michael,Paige went on the tredmill and free standing, again she worked hard.
  • Paige`s new splint`s need some adjustment`s but we have to wait untill moonday.
  • Hard to believe have 2 week`s left before we head home, how fast the last 3 week`s have gone.We can see improvement`s now Paige has no pain.Not sure at this point if she will be able to do any walking unaided before we return home,as those muscles are so weak.But we will get there.We go through so many emotion`s each day.
  • Wtching the new`s in the room was all about the storm`s in Kentucky, there were reallky hit bad.
  •  

 

  • Post Op Day 15
  • At this point of our journey we would like to say a Big Thank you to all our family back home for your support.We miss you and love you.Paige say`s also the dog`s and cat.........lol.
  • And to all the friend`s and people that helped to get us on this journey.
  • Saturday today so no hospital physio.
  • Paul has started using the gym in the hotel,he has come to the conclusion that it is time to address his weight problem. ( even though he is sure that he has not put weight on while being in America, that it is just the hotel tumble dryer shrinking his clothe`s)
  • Paige started her physio with 10 min`s on the hotel tredmill.Then 1 hour in the room physio.Using her Budweiser ball.With Paul supporting her she was able to kick the ball with both feet , pre SDR she coukd only use her right foot, becouse of the tightness.
  • Paige is still having medicine for her nerve spasm`s, as these are still quite bad, but with time should soon get better.They do wake her during the night though.This is due to the nerve`s being sheared.
  • Paige`s dressing on her wound came of , good to see it is healing nicely.
  • We had arranged to go to the picture`s with George and his mum and dad.To see Norax. 3d film.We thought both kid`s hard worked so hard this week.The film was great, us adult`s enjoyed it as much as the kid`s.
  • Paige was exhausted on returning to the hotel.We have still to build her stamina up, this take`s time after SDR.
  • Paige recieved a card from Auntie Sharon today, Paige loved the message.
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  • Post Op Day 16
  • Weather sunny today, no physio at the hospital, so Paige did her physio in the room and 17 min`s on hotel tredmill.The best she had ever done.
  • When Paul and me were talking she took 7 step`s on her own...all i can say is wow.
  • We cooked a sunday roast today, it was so good.George and his family came to share it.
  • Later in the day Paige did some work in the gym.She looked alot stronger today. 

 

  • Post Op Day 17
  • Physio at 11am today, with mad Michael. Paige`s splint`s still rubbing her so we have had to get them looked at again.
  • Physio went well and Paige took an amazing 28 steps on her own.What an achievment.
  • If we can get her more mobile then we can work hard on building those muscle`s.when we return home.
  • She did standing up on her own,side stepping on the tredmill and independant walking.
  • After physio we took some lunch at the hospital before going down town,we went to Maccy`s, wich is a large department store.
  • There is suppose to be some bad storm`s on wed`s evening, so the hotel tested all the alarm`s, all a bit worrying.The hotel staff are saying the storm`s are earlier than normal this year.
  • Paige recieved a lovely Good Luck card from uncle Wayne`s family in Wale`s.She say`s a big thank you for the money and will enjoy spending it. 

 

  • Post Op Day 18
  • Had a bit of a lay in this morning, untill 9.15am.Got ready slowly for physio.Got the shuttle at 12pm as appointment at 1pm.
  • Beth and Abigail for the session.Good to hear that they both could see improvment`s with Paige.
  • She walked approx 60 step`s independantly,some walking upthe stair`s and 15 min`s on the multi gym.Paige was done in at the end, but had pushed herself for the whole hour.
  • She enjoy`s the physio with Abigail, but doesn`t stop talking from start untill the end.
  • Splint`s still rubbing so a trip to the other end of the hospital, to try and resolve the issue.
  • Chill time at the hotel untill tea, then George and Paige did 15 min`s with there dad`s in the gym before going back to the room.
  •  

 

  • Post Op Day 19
  • Up early this morning, as we have Paige`s post op evaluation with Dr Park at 8am.We arrived at the hospital at 7.50am.Dr Park arrived at 8.10.
  • We were his first appointment of the day, he has alot of English patient`s to see before he fly`s to England at the end of the week for the SDR party in Daventry next week.
  • He started by asking Paige how she was? and if she had any pain.We discussed the fact that she was still having night spasm`s.And said he would get us more medication to try and control these.they should soon stop.
  • Dr Park got Paige walking,stepping up onto a step, and some hamstring stretch`s.
  • His conclusion was that Paige had no longer any spasticity.And that a physio and a personnell traininer are now the key factor`s for her progress back home.
  • She need`s to do excercise for the rest of her life.And to push herself and do a hard work out daily.
  • To stand with her leg`s straight, shoulder`s back.This pull`s on Paige`s hamstring`s but will get easier.
  • He want`s her to walk fast and this will help her control.
  • Also Paige does not now require her splint`s but will have some shoe insert`s made before we go home.
  • In 6 month`s Dr Park want`s us to send a video of Paige`s feet ankle`s andleg`s.Also showing Paige outside doing as many activities as she can do.He will then decide if we have to come back in year`s time.But said if Paige does all the above we may not need to.
  • His final comment was Paige should in a year`s time be able to walk almost perfect............
  • Could not ask for a better statement from Dr Park.
  • So come on Paige let`s do this..............................................................................................................
  •   

 

  • Post OP Day 20
  • The storms never arrived last night. thank goodness.
  • To the hospital for 11am physio with Erica.Alot of walking on the tredmill.We also had some tape put on Paige`s leg`s to try and control her knee turning in, while those muscles build.Paige loves her sessios`s with Erica and doesn`t stop talking all through the session and has Erica laughing with some of her comment`s, those who know Paige will know what i mean.
  • Back to the hotel, luch and then Paige`s afternoon physio with dad,No time to rest .
  •  A lot of the SDR people have gone home today. 

 

  • Post Op Day 21
  • 8am physio , so on the shuttle for 7.15.Erica got Paige walking down the fire exit stair`s and back up.She did well on this. But her independant walking was very poor again today.Becouse of how weak those muscles are and confidence seems to be an issue.
  • The physio`s knowledge in America is amazing, wish we could put Erica in our case and take her to the U.K with us.
  • After physio we got the shuttle to the supermarket for some more food , our last shop before we go home.
  • We all went in the pool for a splash back at the hotel, Paige`s legs are now straight when she swim`s  before they went out to the side, so strange to see the difference. 
  • When we go home we need to encourage her to do as many activities as possible.
  • 1 hour in the gym with dad, doing tredmill.balance ball,leg raises.
  • WOW Paige has worked hard and really has started to enjoy working out.
  • All tired tonight mainly Paige so in bed for 9pm.

 

  • Post Op Day 22  Saturday
  • No physio at the hospital today.So dad took Paige to the gym for 1 hour.
  • Arranged to go to The Magic house with George and his family. reat for the children`s hard work.And our first Mc Donald`s in America afterward`s, gosh it did taste good.
  • Back at the hotel to chill, we have to put the clock`s forward tonight for Spring time.So only 5 hour`s difference from the U.K.
  • Weather has been fab today.69.......... 

 

  • Post Op Day 23  Sunday
  • Got up a bit later today as no physio at the hospital.
  • Paige got up in a very negative mood today, as she feels she is working hard but can not walk as good as she could before.So we had along chat to explain how we need to build her muscle`s first wich give her the balance.Alot for her to take in and i know she is trying hard, but very early day`s.
  • A few tear`s later she was ready to go to the gym.
  • Paige`s leg`s today just looked so weak and  as if she had no control, but we need to stay positive as the Dr`s and physio`s do know what they are doing.
  • We had lunch and and played a few game`s of snap, also did some homework.
  • We got Paige to do some walking around the room ,her arm`s were going everywhere wich was causing her to loose balance.So we tied them by her side,Wich straight away gave her better balance.The hall way`s in the hotel are very long so we decided to get Paige to do some walking up and down them.She managed with alot of stopping to walk 375 steps.And only fell once.WELL DONE.Bless her she was exhausted.But we all felt better.

 

  • Post Op Day 24
  • Weather gorgous 70 and sunny with a slight wind.
  • Da started with an hour in the gym for Paige as she has a late physio today.
  • Paige`s balance poor again today,
  • We got the shuttle to the hospital at 12, physio with Erica .She focused on those gluc muscles today.
  • Paige wasn`t allowed to go in her wheelchair to physio today, as Erica had set this task on Friday.As we got to the hotel entrance Paige fell straight down onto her knee`s ouch.But she did get straight up and carried on holding dad`s hand.She managed to get up the shuttle bus on her own as well.
  • Paige walked from the main hospital entrance to the therapy room on floor 4.This took her 4o min`s and she had to stop when she was loosing her balance, she was also very nervous of people passing her.Her walk was not as good as before SDR but we are building her stamina back up the more she walk`s.
  • I hour physio and then a walk back to the hospital entrance.
  • Amazing how thing`s do progress as 2 week`s ago after the operation she could not even stand.
  • Got the metro to The Gallagher shopping centre, to buy some gift`s from the Disney shop for 3 special boy`s back home.
  • Back to the hotel at 8pm.nice to have a bit of retail therapy.
  •  

 

  • Post Op Day 25
  • Lovely weather 75 today and very sunny.
  • Paige missing home now and counting down the day`s to we fly home.
  • Paige did her 1 hour in the hotel gym.
  • Physio at 1pm with Beth, she worked Paige`s Gluc muscles hard again today.
  • Had tea with George and family and a nice catch up chat. 

 

  • Post Op Day 26
  • Physio at 9am with Erica again Paige walked from the hospital entance to therapy and back.Not a very smooth walk as she is very unsteady, but a least she is walking.
  • We decided to go to the zoo today.We walked (Paige in her wheelchair) took us about 50 min`s.What an amazing Zoo, and it is free to go in.Weather lovely again 79 and very sunny.We walked back to the hospital only took 30 min`s on the way back.
  • Back at the hotel for 5pm.Shower and tea with George. 

 

  • Post Op Day 27
  • Last physio today .We had to be there by 8am.Erica did a video on Paige walking and took some measurement`s of her leg and feet range.There had been a good inprovment on both leg`s since the tightness has been taken away.But we still need to do alot more work on the right leg to get it to the level of the left.Erica gave us the list of excercises we need to do back home.She want`s us to do a video of Paige in about 2/3 month`s and send it to her, by this time muscles should be developing and Paige should walking alot better than today.A big goodbye to Erica.
  • Back at the hotel  Paige did her 1 hour in the gym .
  • We started packing today, Paige is so excited..........
  • We said goodbye to George and his mum and dad today at 4pm.They fly home.It has been lovely for Paige to go along this journey with such a lovely boy.

 

We fly home on Saturday 17th, so only 1 day left in ST Louis.This has been a long journey from the day we first heard of the SDR operation,sending the information to Dr Park, being passed, for the operation  , 6 month`s of fund raising.The last 5 week`s have been filled with lot`s of emotion .Having to watch our very brave daughter go through the operation, being in so much pain.Not being able to stand afterward`s and trying so hard to learn to walk.Paige is so focus on building her muscle`s i know she will get the most from this operation.

We are very lucky to be given this chance, as Paige would of  been in alot more  pain as she got older and most certainly would of ended up in her wheelchair all the time.

We would like to thank everyone who has supported us with our fund raising, so we could make Paige`s dream come true.Paige is very special and deserved this chance.

Thnak you to Dr Park and his team for looking after Paige.And a massive Thank you to Michael,Beth,Abigail and Erica the Physio team for working with Paige.We will keep our site going with Paige`s progress over the year..

Debbie.Paul and Paige.

 

 

 

  Paige having her first meal out in America after her SDR operation.
  Paige & George at the Budweiser factory near the hotel
 Paige & Mum at the Budweiser factory near the hotel.
 Paige & Mum getting off the tour bus at the Budweiser trip.
 Paige & Mum making sure that the production line was working correctly for dads supply.
Paige having her first treadmill workout with mad Michael.
 Paige having her first workout on the treadmill with mad Michael.
 Paige taking her first steps after the SDR operation.
 Paige's first night at the hotel after her six day stay at the hospital after her operation.
  Mum & Paige conforting each other prior to the SDR operation.
 Paige on the trike starting to build her muscles after the SDR  operation.
 Paige back at the hotel after her SDR operation.
   Paige having her final breakfast at the hospital before leaving to go back to the hotel.
 Paige having her first meal out in America.
 Paige working hard at physio to build the muscles up after the spasticity has been taken away.
 Paige working hard on the treadmill to build her weak muscles up.


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