St Louis Diary

Was feeling a little sad today as it would be Callum's last day of therapy. It was with Michael today and he had promised that he would take Callum round the hospital on one of his mad bike rides. First of all he did Callum's measurements and was really impressed with his ranges and did the spasticity test and confirmed that yes it had all gone!!!!! He then got me to video him, as he couldn't quite work out how to use the video camera of him walking up and down the room. Then it was time for the bike ride. Michael wanted us first to stop off at Dr Park's assistant's office as he just wanted to check that Callum's scar was healing OK as he had a couple of bumps on either end of it, but she confirmed it was all OK and probably just a little more bumpy because Callum is so skinny!!! Michael told us that Callum should start to put weight on now as his body won't have to work twice as hard as before as he has no spasticity to work against which is good to hear. James also came along to see us and to say goodbye and gave us some information on a cerebral palsy sports workshop that Callum may like to go to next year when we return for our follow up. Then we were off, Callum riding the bike us all running behind him, all round the hospital corridors, up in the lifts there were people jumping out of the way. Callum had so much fun and did really well did quite a lot of the pedalling on his own apart from the hilly bits where he needed the help.

We then headed back to the therapy room and it was time to say our goodbyes!!! Luckily Beth was there waiting for us and she gave Callum a really massive hug and so did Michael. We are leaving therapy with a load of information to take home to the therapists back in England, Beth has also given Callum a personal programme of exercises to pass on to them that he should be doing and they have both given me their e-mail addresses and told me anytime I have questions or anything to please get in contact. They are a wonderful team here and we will really miss all of them.

It was time then to head back to the hotel and start the packing!!! Steve wanted to do the Budweiser tour before we went home so he went off on his own while me and mum packed, I had so much paperwork from the hospital to sort out, plus all the kids toys everywhere was a bit of an epic but I got there in the end, not sure how I was going to shut the suitcases tomorrow Callum had so many cuddly toys to bring home, Steve threatened to throw some of them away but I told Callum not to worry mummy would sort it!!!

We had a farewell BBQ tonight at the hotel with all of the other UK SDR families that are staying at the Residence Inn plus Libby Lee and her family got a taxi over from their apartments. It was a really lovely evening and the kids all had really good fun together, Dylan had an admirer tonight little Evie (Gracie's sister, the family from the Isle of Wight) and they had a little kiss at one point very sweet!!!

Can't believe that it's our last day and we are going home tomorrow will really miss it here but it's our turn to go home now and to get back to a bit of normality and to see all of our wonderful friends and family who have helped us through these last 9 months since finding out about SDR. We could never have done it without everyone's help and it all seems a bit surreal now that Callum's had it done. Even though Callum is still very weak he is probably back to doing what he could pre-SDR but he is getting stronger and stronger every day. Dr Park hopes that Callum will be taking some independent steps by the time we return next year and with lots of hard work on his part he could certainly do this. I won't be posting on here every day now but will put updates on here every month or so. I'm just looking forward to getting home and to seeing what the therapists think of Callum's new legs and his consultants, maybe they will start spreading the word to other families about this wonderful operation that can help kids with spastic cp and how it can change their lives forever it's certainly going to change our little boys. So for now I'll say goodbye and hope you have enjoyed reading about our amazing journey for the last few weeks xxxx

Sunday 7th August 2010

Therapy today was with Beth and Joan came along again to check on Callum's DAFOs but they were still concerned about the redness so Joan decided there was only so much building up you could do and it was time to start from scratch!! So Callum had to be recasted, this time Joan did it, she started off with a footplate that fitted Callum's foot and slowly she built it up with paster cast so that his foot was in the right position and the bone on the inside of his foot wouldn't stick out anymore so no more rubbing!!! Luckily the DAFOs are covered by a guarantee so we wouldn't get billed for two lots, thank god as they are really really expensive!!! These new ones would now get posted to us as we only have a couple of days left and we would have to get them cut down ourselves back home when they arrived. It took Joan over an hour to do this so Callum missed a whole session of therapy which was really disappointing for us as Callum only has one more day of therapy left.

We decided to head to the Zoo this afternoon as we hadn't been yet and really wanted to see it before we went home. It was free to get in but you have to pay for your parking and we hopped on the little train that stops off at different parts of the Zoo. It was a really hot day, Callum wasn't really that interested as he was really hot, most of the animals were hiding in the shade but we got a lovely cooling off in the Penguin house which we all needed!! We paid to go in and stroke the Sting Rays, the boys weren't really that interested, Callum was too scared to hang over the side of the water but me and Steve enjoyed it, they are so soft and if you leave your hand in the water they come up to you for a stroke!!! We saw some baby Elephants having a roll around in the water cooling off which was really lovely to watch. Callum wanted to have a tattoo on the way out and he got a picture of a puppy on his arm. Callum is desperate to have a dog and we have promised he can have one next year after we have been back here for our follow up with Dr Park for working so hard and being such a brave boy, I am also looking forward to having one too!!!!

We headed to the Galleria shopping mall after the Zoo as wanted to get Michael and Beth (Callum's PTs) some lovely thank you cards and some chocolates and we had dinner at the Cheesecake Factory. What a huge menu they have in here but the food was lovely and massive portions and we came away with a doggie bag, so a really nice afternoon and evening.

Saturday 7th August 2010

We said goodbye to Whitney this morning who works on reception as she is going away for a few days, she has been a really good help to us while we have been here and we will really miss her but have become friends with her on facebook now so will be able to keep in touch. PT was with Michael again today and Joan and Beth came to check on Callum's DAFOs. The redness was still there so they both took them off to sort them out. Callum worked really hard today for Michael doing various stretching exercises, kicking a ball until Beth and Joan came back with the DAFOs. They put them back on him and said to have another look in 20 mins so Callum did some walking with his frame and then on the total gym again and we went off to find Beth again, the redness was a little better but she told us to leave them off for a bit to wait for the redness to go down and then put them back on again later and to check again. Callum was really excited today as we were off to Purina Farms after PT to see the Doggies!!! It was great here, they have all different types of animals here and you could pet little baby Piglets and Rabbits. They have a hayloft that the kids can crawl through and play in the hay and also tractor rides but because it was another hot day today the tractor rides weren't working. We also saw a cat and dog show and they did lots of tricks Callum and Dylan loved it. I noticed today when we were watching the show we were sitting on a bench and Callum was naturally just swinging his legs like the other children, before the SDR he would never have been able to do this his legs would have been dead stiff sitting there with him trying to get his balance it's these little things that we are noticing the difference in him amazing!! Dinner tonight at the hotel was hamburgers and hot dogs and we all sat downstairs with the other families while the kids played and the adults chatted. Chris came and joined us (the guy who is staying at our hotel who is in the air force) as he was going home tomorrow for a few days and it would be the last time we would see him, he is a lovely man and loved the boys as he said they reminded him of his kids that he really misses back home and he has invited us to go and stay with him when we return next year and to see where he lives in Kentucky.

Friday 6th August 2010

PT today was with Beth and the first thing she did was to check Callum's DAFOs for the red marks and they were even worse than yesterday ouch!! So she took them away and added some different padding to what Michael had added yesterday to see if this would make it any better. Callum did some really good walking today in his frame lifting his legs right up like a soldier he's finally getting used to his new trainers which is good. Beth checked his DAFOs again after he did some work and the redness was still there so she took them off again to add more padding and told us to check this again in an hour or so later that afternoon. We were going to head to the Zoo after PT today but it was a scorcher of a day apparently the hotest day in St Louis for 3 years the temps were going to exeed 100 degrees so we decided it wasn't a good day for the Zoo after all. We headed off to the City Museum instead as it was inside but when we got there it was like a madhouse it was so busy and you could see that it involved a lot of climbing which wouldn't be very good for Callum with so many children in there he would get trampled on so instead we went to a sports bar just across the road and had a nice lunch instead in the cool!! Steve was heading off to see another baseball game tonight with the other SDR dad's who are here from the UK so we stayed downstairs in the bar for a little while with Debbie and Sophie and the kids had fun together.

Thursday 5th August 2010

PT today was with Michael, he checked Callum's new DAFOs and he had some red marks on the inside of his foot where the bone is sticking out so he added some padding to that part and will check again tomorrow. Callum did some walking on the treadmill but still finding the shoes hard to get used and was doing some awful steps and tiring out quite easy and making excuses all the time that he needed a drink so that he could stop, cheeky monkey!!! After the treadmill he did some work on the total gym and then Michael got him to do some kicking in his walking frame. After PT we came back to the hotel and had some lunch and then went out on a boat trip down the Mississippi River.

Wednesday 4th August 2010

We went to Grants Farm today it was a little drive in the car and would definitely recommend it for those who are coming over here for surgery. It cost $11 to park your car and the rest is free. When you arrive you have to get the tram which takes you around the park you get to see loads of animals some may even come up to the tram Callum got a bit scared of this!!! Once you get off you can feed the goats, see some of the other animals around the park, watch and elephant show and an animal encounter show Callum really enjoyed it and we bumped into his little friend Sophie who is also here having surgery, it was a lovely day out but very very hot!!!

Tuesday 3rd August 2010

Saturday today which means the weekend off of therapy. We decided to hire a car today to give us a bit more freedom for our last week, the hotel shuttle bus has been great but it will only take you within a 3 mile radius and taxis are quite expensive. We sorted it out on-line and me and Steve got the metro to the airport to pick it up. In the afternoon we had a little drive down to the Arch as everybody wanted to have a go on the helicoptor ride over the arch except for me was very scared and decided to stay down and take the photos. Callum went up with Nannie and Steve took Dylan up everybody enjoyed it and Callum wanted to go back up again as soon as he got off but we said next year when we come back he can do it again. Had a little drive around downtown St Louis and then we went back to the hotel. Callum is really struggling to walk with his new shoes at the moment, they are so big but have to be because of the the new DAFOs he keeps tripping over them and getting quite cross, but we are hoping he will get used to them in the next few days. Mum made us all shepherds pie and vegetables tonight for dinner it was lovely!!!

Monday 2nd August 2010

Physio today was with Michael again and Callum worked really hard, he did lots of walking in his walker, still trying to get him to take nice long strides and flat feet which he is able to achieve if he thinks about it. He also worked on the total gym again which he did really well at and then on the treadmill, a really great session today. Michael told Callum at the end he could choose something fun to do and said he could either climb up into the treehouse and down the fireman's pole or go down the slide, Callum chose the treehouse and was so excited until he saw it and saw how high he would have to climb (wasn't really that bad!!). Because Michael saw how excited Callum was about the treehouse he still tried to get Callum to do this but Callum cried and shouted how scared he was but eventually Michael got him to the top and got him down the fireman's pole, Callum was really upset by this point and I think Michael felt really bad but I told him not to worry and that Callum was a bit of a scaredy cat with things like that!!!

After physio we had to call in to see if Dr Park had finished surgery for the morning as he was going away next week and this would be the last chance he would get to see Callum and luckily he was there. Dr Park examined Callum's legs and couldn't believe how quickly he had gotten over the hamstring surgery as he wasn't whincing in pain when touching his legs. He asked Callum to do a little bit of walking and told him that he needs to concentrate now on walking with his knees straight. He had a little feel of his legs and noticed that Callum's left leg still isn't able to completely stretch out, he said that his hamstrings would need stretching out for the rest of his life and that his left leg probably would never be 100%, but he was really pleased with the way he was progressing and he hoped that by the time we returned next year for his follow up appointment Callum would be taking some independent steps!!! We cannot thank Dr Park enough, when you see Callum once we are home you will probably not notice any difference in him but there is a massive difference in his legs and with lots of hard work on his behalf he will go far but this could take months of hard work and physio, I just hope some people won't be disappointed and think that he will change overnight and be running around with all the other children, this isn't going to happen it could take months or it could even take years but we are so glad that we gave him this chance and I'm sure with his determination he will make it happen!

We went off shopping for new trainers this afternoon, we caught a cab to the Galleria shopping mall but every trainer we tried just wouldn't fit with his new AFOs, they needed to be a wide fit as the strap on the DAFOs was quite big so in the end we caught a cab to a shop that the hospital had recommended that specialise in fitting shoes and we managed to get some. They are huge though and are like boats on his little feet but it's what he has to have to fit the DAFOs so we brought a pair to fit him now with the long DAFOs and a pair to fit him when he goes down to the ankle ones in about 8 weeks time or when he is walking with his legs straight.

We finally got back to the hotel as a storm had started and we all got absolutely soaked getting out of the taxi into the hotel but this quickly went away and we caught the shuttle down town to TGI Fridays to have some dinner. Was busy downtown tonight as the Cardinals were playing at home (baseball) but we had a lovely meal and the boys had fun.

Sunday 1st August 2010

Physio today was with Michael and Callum's new DAFOs had arrived so he spent most of the hour fitting Callum into them and cutting them down to size. After physio we went up to the 12th floor to visit Libby and Gracie who had their surgeries on Tuesday and were from the UK as well, we took them up a balloon and got some smiles from them which was nice. After we decided to take the train to Union Station as Callum's trainers didn't fit his new DAFOs but it was a waste of time as not really that many shops there. Mum made us all fish pie for dinner tonight as it was only cheese and biscuits downstairs but we went down for an hour or so after dinner to catch the last 30 minutes of the free beer and wine!!!

Saturday 31st July 2010

Callum was discharged really early this morning, the nurse who took over last night said she didn't know why he had to stay in as he was absolutely fine so they were back at the hotel by 8.30am in time for breakfast. Callum looked really tired and me and mum decided to take Dylan out somewhere today and let him have some fun. Our friends, the Wright's were leaving this morning to go home to the UK so we hung around to wave them goodbye. We're really going to miss them, they have been a wonderful support to us and we've all had some great laughs. Jordon was so excited to be going home his face was a picture when their cab finally turned up to take them to the airport, I can't really say that I'm excited about going home, we've only got just over a week left and the support we have here from the whole of Dr Park's team is great and I just wish we could have afforded to have stayed here for six months and carried on the physiotherapy here but it just wasn't feasible

We decided to take Dylan to the Magic House (a children's museum) as so many people had told us how great it was for the kids but a place that involved a lot of climbing and not really something that Callum can't do at the moment. Dylan had a great time there was lots of things for him to do, lots of climbing and running around and we passed a few hours away before catching a cab back to the hotel. Callum was asleep when we got back and Steve said he'd been asleep for about 3 hours which was great just what he needed and when he woke he was in a good mood. Dinner tonight downstairs was burgers and hot dogs and we had dinner with Debbie, Peter and Sophie (Sophie had the surgery last week) and we stayed downstairs with them for a few drinks. There's a guy who is staying here long term who is working near to here in the US air force and tonight at dinner he was in his uniform and came over and was chatting to Callum. I had actually spoken to this guy before about Callum and he was asking why Callum had plasters on his legs and we told him that he'd just had more surgery. His name was Chris and after he went upstairs to get changed he came back downstairs with some goodies for Callum as Callum had his eye on his beret. He gave him his first ever beret that he was given in the air force along with his name badge and one of his wings down Callum wore all of this for the rest of the evening he was ever so chuffed!!!

Friday 30th July 2010

We had to be in the hospital by 7.15am so a nice early start today. We had a little waiting around to do as Dr Dobbs, the orthopeadic surgeon was running an hour and a half late. In all the rooms here they have playstations and TVs so Callum passed the time away playing a few different games on this. Then about 10am it was time for him to have the medicine that makes them really sleepy and the different doctors and nurses came in as usual to check him then it was time for him to go down. This time though he was still awake and hadn't fallen asleep like he had for the SDR surgery and I thought to myself oh no we're gonna have problems when they take him away but he couldn't care a less and waved us goodbye. When Callum's had surgery at home, the first time they put the needle in the back of his hand when he was awake which was a bit traumatic and the second time he was given the gas to go to sleep but here they are given the sleepy medicine which really chills them out before they do anything else with them such a lovely way for them to go off to surgery!!

We were given a little waiting area again with a TV and a phone where they could call us and we got the call from Dr Dobbs about an hour and a half later to say that all had gone well and we would be able to see him soon. Once we were called to recovery Callum was awake, the nurse said he had only just asked for us and he had a big tear drop in his eye but other than that he was very brave! He was moved up to the ward on the 10th floor when Nannie arrived with Dylan and within about an hour Callum was back to his usual self, singing and shouting amazing!!! The nurse told us that he would have to stay in that night as they like to keep an eye on them during the night but there was really nothing wrong with him and when the nurse said he could eat we rang down and ordered him roast beef with gravy, mash potatoe, green beans and pears for pudding he polished the lot off!!!! Steve was going to stay with Callum tonight which I'm glad he did as he didn't have his own room this time and was sharing with another little boy who was 11 who had had an operation on his leg but wasn't being a very good patient and kept screaming out in pain and being sick!! Brandy, the physio came round to see Callum and got him out of bed and he managed to do a little bit of walking but said that his stitches were hurting too much so got back into bed but she said that was fine and he did really well and to try some more tomorrow. I left the hospital about 6pm and left them to their boys night, they were going up to the 8th floor to watch the new Karate Kid film and up to Callum's favourite place the roof top garden. I just hope they get some sort of sleep tonight!!!

Thursday 29th July 2010

Callum had a follow up appointment with Dr Park at 2pm today, so we spent the morning doing his usual stretches and exercises. Callum is near enough back to his usual self with his walker and we left the wheelchair at home today it was so lovely not having to take the wheelchair with us. Dr Park was really pleased with the way he is progressing and confirmed again that Callum would one day walk independently. He wanted to see Callum again after his hamstring surgery and before we went home. After it was therapy with mad Michael who was back from holiday. Michael worked him really hard today, he did about 8 minutes in all on the treadmill but still trying to get Callum to take nice long strides and heels on the floor, he said that we would see a massive improvement this time next week after the hamstring surgery. Callum then had a go on the total gym which is a weight lifting machine where he has to push his legs out a really good workout for his legs and we shall be purchasing one of these for his rehab when we are home. He worked really hard and at the end of the session Michael tried to teach him how to kick his leg out properly to kick a football a very good session!! Callum gets a couple of days off of therapy now for his hamstring surgery and we may go back to square one for a bit with his walking and trying to get him strong again but it will all be worth it!!

Dinner tonight at the hotel was subs and meatballs, me and mum brought the boys up early tonight to give Callum a nice bath as he probably wouldn't be able to bath for a bit after the surgery tomorrow and Dr Park had told me to pick the glue off of Callum's scar on his back as it should be nicely healed by now. What a neat little scar it is now on his back. Boys were in bed asleep early tonight and Steve stayed down at the bar as it was the last night he would get to spend with our friends the Wright's who were due to go home on Wednesday.

Wednesday 28th July 2010

Hello Callum. I was so happy to hear that everything went so well for you. Mummy Daddy and Nanny must be very happy and pleased too. I wish you a speedy recovery and that you will be up an about in no time at all. Everyone here in Oz who has heard about you wishes you all the very best. I am watching your web site with delight. Love from everyone here in Australia. Aussie Paul

Tuesday 27th July 2010

Hello Callum, hope everything went well in America. Missed you at school, hope to meet up with you in the holidays. lots of love Caitlin xxxx

Monday 26th July 2010

hi callum, we have been looking your diary and getting update from mum. i am really pleased the operation went on very well and you are on the rehab. what a determine little boy you are... we are looking forward to see you soon... get on with some hard work.

Monday 26th July 2010

The weekend just gone was fab. Saturday it was Emma's (Jordon's mum's) birthday so we all went off to Maceys did a little shopping and then we had a wander over to City Park. It's great here there's lots of water fountains that the kids can run through and cool off and Callum, Taylor and Jordon got stuck in straight away and it wasn't long before they were absolutely soaked, wheelchairs and all!!! Dylan was a bit of a scaredy cat to begin with but then Taylor managed to get him in there. It was great to see their smiley faces and having a good time, we had a couple of rain showers too but it was nice to be cool for a change!! As the kids were so wet and we never had any towels, we decided to walk to Union Station (the local metro station that has a little shopping centre and a couple of restaurants) so they could dry off a bit before we called for the hotel shuttle to come and pick us up, it was quite a long walk and we were all in need of a nice cold drink when we arrived. That evening we went out for a lovely meal to Houlihans which is at Union Station, very expensive but the food was really nice. Callum's wheelchair still wasn't dry so we left it on the balcony to dry and he used his walking frame to go out tonight. He did really well and had quite a long way to walk from the shuttle to the restaurant I was really proud of him tonight. We had a real bad thunderstorm on Saturday night, when the bus picked us up from Houlihans the weather was awful, the rain pounding down, thunder and lightning in the sky it was like a scene out of a movie and we had to leg it out of the bus with the kids inside the hotel, it was a bit of a scary moment but we were all glad to be back indoors where we finished off the evening with a few drinks downstairs.

We changed rooms again on Sunday as the noise from the roof wasn't getting any easier, so we had all our stuff packed up in the morning and had to wait for the people in our new room to check out and for it to be cleaned. We finally got in there about 5pm, quickly unpacked then it was time to go downstairs and wait for the Lee family who had arrived yesterday but were not staying in our hotel and were coming to visit us all tonight. Libby was having the surgery on Tuesday along with Gracie (another family who are here from the Isle of Wight who arrived last week also). The kids all had a great evening playing hide and seek and we got a Dominos pizza delivery, I think we worked out in total there were 7 families from the UK here on Sunday, it's mad to think that we are all having to travel all this way for this surgery something really needs to be done about it in the UK and there's more families arriving here all through the summer and the rest of the year.

Sunday 25th July 2010

Callum had to be at PT today at 11am and after the bad end to the night last night he was absolutely knackered!!! Steve asked mum if she wanted to go to therapy today instead of him as he was so tired and mum was glad for the change of scenerey and to see how Callum was working. When we arrived for his session it was with Marilyn she showed us lots of new stretches to do with him, he was a bit quiet to begin with think he was still half asleep but then he got to have a go on the treadmill and this woke him up!!! Marilyn was great she was explaining to Callum how he should be walking nice big steps and not tiny little ones like he does now and she managed to get him to stand up so tall and straight for a few seconds he did really well. After this he got to have a go on the bike again and we raced around the corridors of the 4th floor, him pedalling his little legs off trying to chase me and mum it was a fun end to a week of hard therapy. We have the weekend off of therapy now but we have to carry on with his usual twice a day stretches and lots of walking in his walker to get those legs stronger.

While we were at therapy one of the maintenance guys came up to see what the noise was that we had complained about. He said that all he could think it was the generator for the air conditioning system for the whole of the ground floor and there was nothing really he could do about it. He said that he was sorry and if we wanted to change rooms again then to speak to reception. We decided to give it another go tonight and see how we feel the next day.

After therapy we got the shuttle back to the hotel and had an afternoon of catching up with our friends and family on Skype it was lovely chatting and seeing everybody and we even got to watch the end of Eastenders while talking to David, Clare and the kids can't believe what Lucas is up to!!! I had a lovely chat with my best friend Lynsey who finally got her Skype up and running it was great to catch up with her we usually talk to each other every day at home and I'm really missing her being here but there's no stopping us now she's all sorted.

There was no food tonight downstairs so we had a couple of pizzas in the freezer which we put in the oven and had with salad, we were all really knackered tonight after the previous night's events so me and mum stayed in the room with the boys while Steve went downstairs for a beer and a chat with the others. We gave the boys a bath and got them to bed early as tomorrow would be a busy and late one as we were heading out for day and dinner tomorrow night with the Wright's as it was Emma's birthday.

Sunday 25th July 2010

Had a lovely lay in this morning, PT wasn't until 3pm so we did Callum's stretches and got him to do some walking up and down the hotel corridors. He is getting a little stronger every day but still very weak but working really hard. Me and mum had a trip to the grocery store to get in some more supplies as the dinner downstairs tonight wasn't much so mum was going to make us all fish pie yummy!!!

After lunch we got the shuttle to the hospital PT was with Beth today she is really lovely and really reminds me of my friend Jackie Flower. Callum got to have a go on the treadmill today, he walked for a couple of minutes forward, backwards and sidewards with Beth holding onto his bum of course. She is trying to teach Callum how to walk properly nice long strides but he's not finding it very easy at the moment due to his tight hamstrings but this will all become much easier to him after the surgery next week.

We had a little bit of excitement tonight, the air conditioning in our room hasn't been working too well over the last few days and tonight while mum was cooking the fish pie the room got hotter and hotter we even had to open the door in the end and let the cool air in from the corridor. We called down to reception and they sent somebody up to look, he told us because the sun is on our room all day that the air conditioning was finding it hard to cool our room down but he would give the system a clean out and see if that made it any better. Anyway we went off downstairs while he did this and to see everybody else. After a little while the man came down to find us and told us that he'd had a bit of an accident and had dropped the system down the chute and wouldn't be able to carry on until tomorrow when there were more staff in to help. He said that it may be a little warm to sleep in there tonight and if we wanted to we could sleep in another room and to speak to the reception staff. We also had a problem with ants in our room too so decided enough was enough and asked if we could change rooms for good so went off to speak to reception. The guy on reception agreed for us to do this he could give us a room on the 8th floor with a balcony on the other side of the building which didn't have the sun on it all day so would be a lot cooler, but we had to pack everything up tonight, it was about 8.30pm at this point!!! So it was all systems go, the boys were so excited about it and we'd packed, moved and unpacked by 10pm and decided to head back downstairs for one more drink as the boys were so awake still with the excitement. When we finally got to bed that night, we noticed an awful buzzing noise that was coming from the roof, we wasn't sure what it was and Steve found it really hard to switch off and go to sleep we couldn't believe it after all what we'd done tonight and it looked like we'd have to move again!!! I was OK I put my earplugs in and so did mum, the boys fell asleep in the end probably through exhaustion it was gone midnight by now and Callum had therapy in the morning but Steve didn't have a very good night at all!!

Saturday 24th July 2010

We were up and at the hospital early this morning as Callum's PT session was at 9am with Lawrie. She worked him really hard, and got him to kneel up on just one knee which he was never able to do before. It hurt him a little but this was because his hamstrings are still too tight. Nannie and Dylan came to meet us at the hospital after and we walked to the Science Centre to pass away a few hours as we had to be back at the hospital at 3.30pm for the appointment with Dr Dobbs the orthopeadic surgeon. It was really hot out today and once we had finished at the Science Centre we had a little walk back to the hospital by the time we got there we were all dripping in sweat. We still had a couple of hours to spare so Steve took the boys to the playroom where Callum played on the Playstation and Dylan with all the other toys.

Dr Dobbs confirmed what Dr Park thought and said that Callum's inner hamstrings are really short but his outer hamstrings are fine and the surgery would be great for him and after this he will be so much straighter and able to get his feet flat on the floor. He is scheduled to have this next Tuesday 27th July and will probably have to stay in overnight but this surgery won't be as bad as the SDR. We came away from their feeling very positive, the Doctors over here are just amazing, they even give you their e-mail addresses and if you have any questions they respond within an hour!!! Can you imagine doing that at home!!!

Tonight was BBQ night at the hotel, hamburgers and hotdogs and we all chilled out after with the other families and the kids had fun.

Friday 23rd July 2010

Callum was casted at his PT session for his new DAFOs which are a bit like our splints but a lot nicer. They comprise of two parts, for the first 6 weeks he will have to wear the first part which are very much like he wears now all the way up the leg and then once he is able to walk without bending his knees they turn into ankle ones which are so much nicer for him. He got to choose the design for the plastic which he chose the American Flags, the design for the straps, which he chose dogs and the colour of the foam bits, not like home he just gets to choose a colour of the plastic and that's it so he's going to be so snazzy when he gets home and shows all his friends!! Eventually all he will need is an insert in his shoe which we are bringing some home with us as once he is down to wearing his ankle splints they want him to just wear the shoe insert when he is having physio to make him work harder. After he had his casting he did a little bit of walking with his frame then we got the shuttle back to the hotel.

Nannie had lunch waiting for us when we got back as we'd promised the boys we would get the metro and take them to Build-a-Bear in the afternoon at the Galleria Shopping Mall. Both the boys had great fun and stuffed their bears, Callum called his Cookie and Dylan called his Woof. Callum chose to dress his in the Cardinals baseball outfit and Dylan chose the Missouri American Football outfit. Nannie made us all a curry tonight as the food downstairs wasn't much and then we joined all the other families after dinner for a couple of drinks and the kids had a play.

Thursday 22nd July 2010

Callum had a great night, didn't wake once which was good and we all slept in until 8.40am!! PT today wasn't until 3pm so we decided after breakfast to go and have a wander down at the St Louis Arch to kill some time. The shuttled dropped us off and we had an ice cream and a little walk along the Mississippi river. We decided to walk along and find City Park as they have jets of water that the kiddies can run into and cool off. It was really hot and humid today and we were on thunderstorm watch and we were absolutely dripping in sweat so decided to have a cool off in Maceys as we were passing. It was nearly lunchtime so we had some lunch and then called the shuttle bus to come and pick us up and take us back to the hotel to pick up Callum's walker before heading off to the hospital for PT. There was an awful storm outside but the bus picked us up and we managed not to get too wet. We left Nannie and Dylan at the hotel while we took Callum for his PT session, he had Jill today and she was lovely. He did some sit to stand and shot some hoops, and played catch with Daddy. We were so impressed as Callum is now able to catch a ball really easily, something he found really hard before as his hands would just cross over each other but now bang, he could catch Daddy was very pleased with this!! After this Jill said let's try and do some walking. We'd actually tried the previous night with him in his walker but I basically gave him most of the support but Dr Park said we need to keep trying. We couldn't believe it he started off with me just holding under his arms, then he said "Let go of me" and he was off, his legs are still very weak he was very wobbly but what a determined little boy he managed to walk about 50 feet amazing considering he's not even 1 week post op we are so proud of him had had worked so hard!!

After PT we got the bus back to the hotel, Callum had a little lay down then it was dinner downstairs tonight, pasta and garlic bread and we met up with all the other UK families and everyone got to meet Debbie, Peter and Sophie who had arrived on Saturday, Sophie is having SDR tomorrow and she is going to be Dr Park's 2000 patient so it's a big celebration here and the media are going to be involved so Sophie is going to be a star!!!

Wednesday 21st July 2010

Yay today was the day Callum was getting discharged!!! I was at the hospital by 7.45am as Callum had PT at 8.30am with Miranda. She basically went through everything with us and he got to have another go on the bike which he just loves and did some crawling then it was over and time for us to leave!! The hospital staff here have been amazing, the hospital itself doesn't feel like a hospital more like a hotel and the nurses and doctors are brilliant (apart from those 2 that Callum got on his first night on the 12th floor). Dr Park comes to visit the children every day post op to check everything is OK he is like a god at the hospital everyone talks about him so highly. And when he came to visit Callum late last night after I had gone home he told Steve that we need to get Callum walking as soon as possible with his walker he said he may fall at first but to just keep at it, it was the only way he would get those leg muscles strong. Steve told me something really nice today, when he took Callum up to the roof top garden last night Callum had said to him "Daddy, do you know what, this operation is the best thing that could have happened to me in my life", Steve said he didn't know how he stopped the tears from falling. But it goes to show that Callum's little body must feel so much better now that all the spasticity has gone and he is more relaxed. Anyway we were out of the hospital by 10am and straight back to the hotel to see Nannie and Dylan.

We had a fairly chilling afternoon, me and mum went to the grocery store to get some more food as I really fancied a roast tonight, some vegetables which you don't get much of here. Mum cooked us all roast chicken, it was delicious then we went downstairs to the bar to meet up with the other UK families. All the kids had some fun and you wouldn't have thought Callum and Elodie had just been discharged from hospital that morning they were racing around in their chairs and Elodie being pushed in her buggy shrieking with laughter, the horrible part was all over now the fun could begin!!

Wednesday 21st July 2010

I got to the hospital early today as Callum had PT at 9am and the boys had had quite a good night. Callum had Beth again for PT, she's great he did some work on high kneeling which he really cried at as said it hurt his back, then she got the basketball hoop out and he enjoyed shooting some hoops. Elodie was also at PT the same time and she came over and they shot some hoops together while high kneeling which they both really enjoyed. Then Beth asked if they wanted to have a go on the bikes which they both did and they raced each other around the gym there was lots of laughter!! After PT Callum wanted to go up to the garden again and then into the playroom where he played on the playstation and then it was back to bed for a rest before the next PT session at 1pm and some lunch.

The next session was also with Beth and we couldn't believe the difference in him from this morning. He first of all was throwing the monkeys into the net sitting on the bench and then Callum asked if he could play in the house as he wanted to play The Big Bad Wolf so Beth said did he want to try to crawl over there. I really didn't think he would be able to do this after the crying this morning but he managed to get himself up on all fours with a little help from Beth and then he was off. To begin with it was like watching a horse when they are first born he was bum was going backwards and forwards and he kept collapsing but then he got the knack of it and he managed to crawl right across the room to the house where daddy was waiting inside pretending to be one of the 3 little pigs!! Then Callum got to go on the bike again, racing with Elodie as she was in PT at the same time so the session ended with lots of shrieks of laughter!!!

After PT Callum wanted to visit the gift shop again to spend some more money, this time another cuddly toy think we're going to have to buy another suitcase to bring all the cuddly toys back to England!! Then we went back to the room to see if Nannie and Dylan had arrived which they had and back up to the roof garden for a little wander. Steve was staying with Callum again tonight so I went back to the hotel with mum and Dylan and the boys had another boys night together. Was looking forward to Callum coming back to the hotel tomorrow so we could get back to some sort of normality.

Tuesday 20th July 2010

Callum woke this morning on top form, it's amazing how quickly they recover from such a huge operation it's unbelievable!! We ordered pancakes for breakfast and he ate a little. Beth (the physio) arrived at 9am and showed us how to lift him properly and get him into his wheelchair then we were allowed to take him for a walk for an hour or however long he could manage. Callum was still hooked up to his IV as they wanted to give him his 12pm dose of valium through it so Eric (who is on the floor doing his training) came along with us to push his fluids along. We went up to the roof top garden on the 8th floor, it's beautiful up there so peaceful Callum loved it and after that we had a little look in the playroom but then he said he wanted to go back to the room as his back was hurting. It was Dylan's 3rd birthday today and we brought his presents to the hospital so he could open them in front of Callum. It wasn't much of a birthday really for Dylan but we would make up for it once Callum was out and much better.

After lunch it was PT again this time with Michael and what a nutcase he is!! Just before Michael arrived Callum started moaning he was tired and his back was hurting, but Michael completely changed his mood and we went off to see the gym for the first time. Michael showed us how to do the simple stretches that need to be done a couple of times a day and we couldn't believe how loose Callum's legs are and how easy it is now to do the stretches amazing!! Michael also measured Callum up for his knee immobilizers which Callum will have to wear at night, they are really soft, so hopefully he will tolerate them. That was PT over with for today and we promised Callum he could visit the gift shop to buy something with the money that his Nanny and Uncle Gary had given him. Then it was back to bed for a little rest, Michael said if Callum was up to it he could have two more hour sessions in his wheelchair that day so he wanted to go and vist the playroom a little later.

Steve offered to stay with Callum tonight as he was so much better so I could go and have a decent night's sleep at the hotel and something nice to eat, so I caught the shuttle back and Steve and Callum had a boy's night, ordered some dinner, watched a film and then Steve took him up to the playroom for a little while where they played the Wii.

Saturday 17th July 2010

Callum had a bit of an up and down today, when he woke he seemed fairly happy but then his mood changed and became quite tearful, said he was fed up and back was hurting a little. He also couldn't see the TV as it was up on the wall and the positions he was laying in he couldn't see it and he was fed up with the IV in his hand and the probe he had on his finger. So we opened some of the presents that some of his friends had given to me to bring over for him and that cheered him up a little especially when we gave him the PSP that one of my friend's that I used to go to school with, Nicky Bishop, had given to me for him. This really cheered him up and we put a film on the PSP for him which he watched for a while and then asked if he could have a game and have a little go. But then it was time for his dose of valium and the next thing he was fast asleep!! When he woke a little while later he was really grumpy and tearful probably due to the valium. I kept trying to make him drink otherwise the IV wouldn't be taken out of his hand but he wasn't really that interested. Eventually they took the probe away as the Fentynal was stopped so he was able to control the PSP more which made him very happy!!!!

Callum's nurse decided not to give him his 6pm dose of valium as his pain wasn't too bad and she said he would have it now at 12pm so that he would get a decent night's sleep. Dr Park came to vist this afternoon just to check up on him he was happy and said that he needed to start eating more so he wanted the IV kept in over night then he could have it removed in the morning. After he went I ordered him chicken nuggets and chips and he managed just a little. Callum wanted me to stay again with him tonight so Steve went back to the hotel and we settled down for the night. I was really shattered tonight and was hoping Callum would just go straight off to sleep but no he was wide awake and wanting stories I think we finally fell asleep about 10.15pm but then he was awake at 11.45pm screaming in pain and wanting his daddy!!!! The nurse came and gave him his dose of valium and some tylenol but then he couldn't get comfortable and I was in and out of bed for a few hours so not a very good night.

Friday 16th July 2010

Hi Darling, hope you are feeling better, I cant wait to speak to you all on skype, Uncle Gary send lots of love, and also happy birthday to Dylan, I am sure you helped him open his presents. Missing you, love you lots and lots you are such a brave boy, better than Uncle Gary was when he had his back op!! Love Nannyxxxxx

Friday 16th July 2010

I decided to go back to the hotel quickly this morning and have a nice shower and freshen up as the PICU nurse told us that Callum probably wouldn't be transferred to the 12th floor until gone 12pm. So I left Steve with Callum and called the shuttle to come and get me. It was nice to get away for a while, have some breakfast and freshen up and get the hospital smell off of me. Mum and Dylan were still there when I got back so mum made me some boiled eggs and toast and a cuppa and I had a nice shower. Steve had offered to stay with Callum tonight as he had had the most sleep so I packed him a bag with some clean clothes.

We got back to the hospital about 11.45am and Callum had just been taken up to the 12th floor about 11.30am, it was much nicer up here he had his own room and bathroom so much more privacy. He was pretty much out of it the whole day on valium and the fentynal and when he did wake he was really quite teary and just wanted his hand to be held. He also got a fever which apparently is quite common after surgery and also caused by the drug that he was on it makes their breathing quite shallow so the nurse told me the best thing was to get him to blow some bubbles so she gave us some bubble mixture for us to keep trying with him, not that he was really interested!! He just kept asking for me all the time and I knew that there would be problems if I didn't stay with him tonight so said to Steve it was better if he went back and hopefully I would get a better night's sleep. I went up the corridor to visit little Elodie, who also had the surgery the same day as Callum, they are from Wales and have met through facebook, she seemed to be a lot brighter but she'd had a bad night the day before whereas Callum had had a good one.

Spent most of the day just sitting around holding his hand and I really wanted to head back to the hotel again to get myself some wash stuff and clean clothes for tomorrow but Callum was really unhappy when I told him what I wanted to do and didn't really want me to go anywhere. Anyway mum offered to sit with him as he seemed to be happy with mum when I was out of the room so that me and Steve could go back to the hotel with Dylan and have some dinner and then I'd go back a bit later for the night shift. Callum seemed to be OK with this so off we went.

It was nice to get back for a bit and chill out, I had a couple of glasses of vino and some dinner downstairs with the Wright's. Jordon was due to have his hamstring surgery tomorrow so he was feeling a little anxious about it. I got the shuttle back to the hospital about 7.30pm. Callum didn't seem too bad so mum got the shuttle back to the hotel and we both just went to bed. Callum is weeing for England at the moment in a bottle as he's not allowed up yet and still laid flat so he had me up a few times in the night but then he would just go straight back to sleep again. His nurse for tonight wasn't as nice as what the nurses had been so far she was a bit abrupt and not very child friendly!! Callum has to be turned every 4 to 6 hours and every time she came in to turn him he would really cry as she wasn't very gentle whereas the other nurses had been!! I think we were both glad when the morning arrived and the new shift of nurses began!!!

Thursday 15th July 2010

Just wanted to wish your a speedy recovery Callum - you have been such a good little boy for your mummy & daddy and the doctors and so brave :-)

lots of love your friends Thomas & Issy x

Thursday 15th July 2010

Hi everyone

Just so pleased to read that the op has gone well. We have been thinking about you and sending prayers for Callum. We will follow his progress closely. Our love to you all. Say hi to Maureen for us. Janet & Tony

Thursday 15th July 2010

Callum

How are you feeling today? Have been doing health and fitness this week and the weather has been pants! Inflatables tomorrow and hopefully this time next year you will be able to have all the fun we are having! See you soon

Love Ella x

Thursday 15th July 2010

I woke this morning feeling a little anxious, we had waited such a long time for this date to finally get here and now it was upon us, stomach kept doing little flips inside and I could have easily broken down but had to keep strong. As Callum couldn't eat I let mum, Steve and Dylan go down for breakfast and I stayed up in the room with him, even though he said he wanted to go down but I said it wouldn't be nice all them smells and he couldn't eat!! We had to be at the hospital for 9.45am and we were met by his nurse and taken down to his room. Callum was in really good form again I still can't believe how grown up he's been over this whole thing and he was given his lovely fishy pyjamas and some nice socks to wear and settled into his bed with the TV on.

He was seen by quite a few nurse and docs coming round checking it was him and asking the usual questions, then a guy came to see him who went through a booklet showing him loads of pictures of the things he might see today and explaining it all to him which really put us at all ease and made the time go by. Callum was then asked to choose his flavour mask that he wanted to put him to sleep. First, he asked for Grape but then decided he didn't like the smell of it so ended up with strawberry. Even Fluffy, Callum's build-a-bear that his auntie Tina brought him got his own mask and wrist band too as he was going down to the operating room with Callum. About 15 minutes before he was due to go down they gave Callum some medicine to drink which basically made him real drowsy so by the time they came to take him away he didn't even care that we were all there, such a lovely way to go off he didn't even look back!!! By this point I couldn't hold the tears back anymore, it was so horrible them taking him away but he was in the best possible hands and I knew deep down that he would be OK. He was taken down about 11.15am and we were given our own private room to wait in which had a phone where they would keep us updated through the whole procedure. After a little while we were phoned to say that he had gone to sleep all OK and they would phone again to say when the surgery would start. They kept us updated the whole way through the surgery, to say they had started, halfway through and closing him up. I spent the whole of this time chatting to different friends on facebook which really made the time go quick. Shortly after we got the call to say they were closing him up, Dr Park came up to see us he walked in with a massive grin on his face to say that it had all gone excellent and he was really pleased, we would be able to see him in recovery very soon and after that we were called to say that we could go and see him. Callum looked really comfortable in recovery he had an oxygen mask on but as we arrived the nurse took it away and said that he didn't really need it as his sats were fine, he opened his eyes a little but wasn't really interested that we were there he was out of it!!

He was taken up to PICU about 30 minutes later and that's where we spent the night, he had a really comfortable night, only had one bout of sickness (we were warned that he may be sick) and he was pumped most of the night with Valium which helped with the muscle spasms and another drug called Tylenol. I decided to bed down in the chair next to Callum's bed and Steve went off to the family room where there were loads of chairs and sofas to sleep on. I slept a little but every now and again Callum would wake and want me to just sit with him and hold his hand, the nurse kept coming in and checking saying how great he was doing which I couldn't believe as was expecting it to be much worse. The doctors and nurses that we have come across so far at this hospital are fantastic, they can't do enough for you and treated Callum so well, they were a little noisy though on PICU through the night laughing and joking so I didn't really sleep that much!! All in all a very successful day and night and so glad now that it was finally over and now the recovery could begin.

Thursday 15th July 2010

Good to see that the surgery went well. Rachael & Henry are looking forward to seeing Callum on SKYPE so they can read him some stories. We send our love and hope you are all well.

See you soon

Paul Sue Rachael & Henry xxxx

Wednesday 14th July 2010

Just read all the diary ,we are so pleased everything went well. Still away to go we know but everything sounds so positive. Good luck and love to you all xxxxxxxx

Wednesday 14th July 2010

Just wanted to send all our love and kisses from England, we're so proud of you Callum and look forward to Mummy's updates on how you are doing! Can't wait for you to come home to begin your new adventure x Lots of love to you Mummy, Daddy, Nanny and Dylan xxxx

Wednesday 14th July 2010

Hi Callum, its Aunty Tina. So pleased to hear that your operation went well and that you now on the 12th Floor recovering. We are so very proud of you and want you to know that we all love you very very much. We are all sending you lots of hugs and kisses and we are missing you all very much. Love Aunty Tina, Uncle David, Sammy, Katie, Dan and Tilly. xxxxxxxxxxxxxxxxxxxxxx

Wednesday 14th July 2010

We were all up early this morning and down to breakfast by 6.45am, the shuttle was booked to take us to the hospital for 7.20am as Callum's appointment was 8am. We arrived really early, Callum was on top form today he'd had loads of sleep thank god and was being his usual cheeky self, chatting away to everybody. I finally got to meet James, who is the man responsible for booking our appointments, sorting accommodation etc. and he showed us to a room where we watched a video on the SDR. It really explained everything and even showed how the operation is carried out.After that we met Joan who is the chief physio over here, she is lovely and she came along with a wheelchair that Callum could borrow until his one was fixed. It's bright yellow and red and has a Hot Wheels sticker on the side so Callum was pleased about that. She had a little look at his legs and asked him to do a little walking in his walker and straight away told us that his walker was set too high for him and lowered it by two notches!!! She couldn't believe that he'd been walking around like that it must have put so much pressure on his arms like that and said how much better it would be now. She commented on how tight his hamstrings were and told us to mention to Dr Park about orthopeadic surgery.

After this we finally got to meet the man himself and what a wondeful man he is!!! He first of all asked to see Callum doing some walking in his walker, he was really impressed with this and couldn't believe how he could run with it and told us that this running needs to be carried on. I couldn't believe this as his physios in England always tell him not to run and to walk controlled so I am always telling him off when he runs!!! He then asked him to to show him how he crawled, how he sat and how he stood up at the sofa. Callum was great he really performed for him I was really worried that he would be a nightmare but thankfully he had had a great night's sleep. Dr Park then told us how the Selective Dorsal Rhizotomy could help Callum, he said his sitting, standing and level of comfort would all be much better. He said that he would walk independently indoors and outside for longer distances he would probably only need a cane. He would be completely flat footed and would be able to stand up straight on his own and sit in all positions and the best news was that he would not depend on his wheelchair anymore!!! Steve did say to Dr Park that Callum really wanted to play football and he said that he wouldn't rule it out!!! He did say that his hamstrings were really short and would definitely need this second surgery and he may also need his heelcords doing too but would see what they were like post SDR. Luckily James has already made an appointment for Callum to see Dr Dobbs, who is the orthopeadic surgeon next week. We were all so pleased with this he is an amazing man and to think that he is going to change our little man's life. It was hard to fight back the tears but didn't want to break down in front of Callum. He said that he would need splints for a little while, long ones to begin with after the orthopeadic surgery and then would go down to ankle ones and hopefully in time he would just need an insert in his shoe. He then asked us whether we had ever seen Callum's MRI scan which we hadn't so he took us in his office and explained it all to us.

After Dr Park we were met by Beth one of the physios that would be working with him while we are here and she took us off to another room where he was filmed walking, crawling, sitting etc. and again he was a superstar and did exactly as he was told!! We left the hospital so happy and knowing that we were doing exactly the right thing for Callum now. Tonight we were eating at the hotel, Monday to Thursday they have a social night where you are given a light meal and free beer and wine from 6pm to 7.30pm. So tonight it was spaghetti with meatballs and garlic bread. We congregated downstairs with the other families from England had our dinner and a few drinkies, the kids all played and Dylan found himself a little girlfriend, Elodie, who is due to have the surgery tomorrow like Callum. Gave Callum a quick bath before bed tonight as he won't get one for a while and we were all in bed by 10pm.

Monday 12th July 2010

Dear All

Was just about to call Pauline to find out when you were heading to the US ....when I received your message that you were on your way!! So I think this must be your first day in St Louis and we wanted to say: we are thinking of you and shall do so every day - especially on the 13th.

We'll keep watching this site for news ! Wishing Callum a speedy recovery from the op and a HUGE hug, with love from Christine and Michael xxxxx

Monday 12th July 2010

Good luck, Callum! We'll all be thinking of you, and hoping that your visit to America is a great success.

With much love,
Karen and family xxxxxxxx

Monday 12th July 2010

Up early again this morning and we spent the morning chilling out at the hotel not having Callum's wheelchair we couldn't really go out and explore too much. We tried to call the hospital to see if we could borrow one but couldn't really get through to anybody and we were there tomorrow anyway for Callum's appointment with Dr Park.

Steve and John wanted to watch the world cup final so we decided to head off to an Irish bar that the receptionist at the hotel had recommended down by the arch to watch the footie and have some lunch. The hotel shuttle dropped us off but think we'd left it a bit late as the football was about to kick off and the bar was absolutely heaving!!!! Me, mum and Emma decided to sit outside with the kids while Steve and John watched it inside at the bar but Jordon who is only 1 week post op was really uncomfortable and it was so humid sitting outside that after a while he'd really had enough so Emma and John took him back to the hotel and we stayed and ordered some food as the kids were hungry.

After we had eaten and it was extra time at the football we rang for the hotel shuttle to come back and pick us up and take us back to the hotel for the end of the game. Callum and Steve were so pleased that Spain won as being Liverpool supporters Torres is one of their favourite players!! After the game Steve and John took Taylor and Callum out to the basketball court and then we just went back to our room for a little chill out and had the boys in bed asleep by 8pm as we had an early start the next day at the hospital.

Sunday 11th July 2010

We wasn't awake too early this morning, me and Dylan woke about 6.30ish and everybody else was awake by 7.30am which wasn't too bad and we were down for breakfast by 9am. You can have what you like for breakfast, eggs, sausage, pancakes, muffins, bagels, waffles fruit a really good choice. Steve spent most of Saturday morning trying to sort out the puncture on Callum's wheelchair, he ended up having to get a cab to the local bike shop where he brought a puncture repair kit and a pump, anyway he has tried to fix it but the split is right near the valve so after many attempts he gave up and has made a call to the bike shop to order a new inner tube which won't be in for a few days so Callum has no wheelchair and with only his walker means we can't really go too far.

We needed to go to the grocery store so we got the hotel shuttle to take us there, Callum went into Dylan's buggy while we did our shopping and then the hotel shuttle came and picked us up when we had finished. In the afternoon we had a few hours to spare so me, mum and Emma (Jordon Wright's mum) took the shuttle bus to Union Station to have a look around and sat and had a nice glass of wine in the sunshine while the boys stayed back at the hotel.

Tonight we had a BBQ at the hotel with the other English families, a couple of the dads had been to the meat market in the morning and brought steaks, sausages, burgers, chicken it was lovely and a big thanks to Jerome and John for cooking it was yum!!! All the kids had fun in the basketball court after dinner and the adults sat around drinking and chatting it was a lovely evening sitting outside. We were in bed by 9.30pm all extremely tired!!

Saturday 10th July 2010

We were all up early this morning and down waiting for the hotel shuttle bus to take us to the airport by 6.30am. We had so much luggage we wasn't sure how we would fit it all on the bus but luckily it wasn't that full so we were OK. Luckily Callum's tyre was still inflated so didn't think it was a puncture after all. After check in we made our way to the business class lounge.

Callum loved it in here, you could help yourselves to drinks, cereal, bacon rolls, cookies, fruit and they had big TVs and even a little children's area with a couple of computers, some books and a TV with the childrens programmes, so we a bit of a chillout in here until it was time to board the plane. Business class was amazing, the seats were so big and comfy and Callum wanted to sit with his nanny and all I could hear as they were sitting behind me, Steve and Dylan was his shrieks of laughter where he was playing around with the seat putting it into all the different positions, laying down, sitting up, laying down, sitting up, hate to think what the rest of the business class cabin thought!!!

We were a bit late taking off from Heathrow we queued for ages for take off can't believe how many planes there were queuing up. The flight was lovely, the food and drink we had was fantastic, proper glasses, ice cold wine, beer and champagne, even proper knives and forks, I said to Steve we won't want to travel any other way now but I doubt after this trip we will get the opportunity to fly like this again.

The boys were fab and the journey wasn't as long as what I thought it would be. We arrived at Chicago about 45 minutes late and realised that Callum's tyre was flat once again so it was definitely a puncture and once through customs etc. we made our connecting flight with about 10 minutes to spare phew!!!! The connecting flight was really quick and before we knew it we had arrived at the hotel.

Once settled in our room and unpacked we went down to the bar to meet the other English SDR families that were here, the Davies', Caroline who is here with Fran who is 1 week post op and our good friends the Wright's who are here with Jordon who is also 1 week post op. All the kids are doing so well and everyone so pleased with the way it has all gone. This has really put our minds at rest and we just can't wait now to meet the wonderful Dr Park on Monday.

Friday 9th July 2010

Hooray, today is the day we start our big adventure, the taxi was picking us up at 3pm to take us to the Premier Inn at Heathrow where we were staying the night before our flight on Friday morning. Callum went to school for the morning and Steve took Dylan out to do some jobs and to go and pick up my mum who was coming with us.

I was doing the last minute packing and then wanted to give the house a good going over well that's what my plans were until ...... I get a phone call from Steve at 9.30am to say that Dylan had been sick and he was going to bring him home!!!! By the time they arrive home Dylan has been sick again and that's how it carried on for the rest of the morning. I've never cleared up so much sick, I reckon every 10 mins he would do a little cough and then was sick again, poor little mite he looked so poorly.

I just couldn't believe it, this wasn't supposed to happen, I was near enough organised just the house to do and now this was happening. Steve went off to pick mum up and I stayed on sick duty. By the time Steve arrived back home with mum and he'd picked Callum up from school on the way, the sick was getting less and less so we decided that we'd get to Heathrow and be prepared in the taxi with the sick bowl and some towels!!!! So we had lunch, closed up all the suitcases and when the taxi arrived Dylan was a little better, hadn't been sick for a while and slept all the way to Heathrow. Thanks goodness that was the end of it, once he saw the play area at the hotel he was happy and went off playing with Callum and he'd even asked when it was dinnertime.

We noticed at dinnertime that one of Callum's wheels on his wheelchair was completely flat and we managed to find a nice man at reception who had a pump in his car so managed to get it pumped up, fingers crossed it stays that way. After dinner, we took the kids out to watch the aeroplanes for a while then had a reasonably early night as we had an early start the next day.

Thursday 8th July 2010

Hi have a safe journey on Friday and Good Luck with your operation. I will be thinking about you.

Best Wishes Love Mrs Nicholson xx

Thursday 8th July 2010

Hi Callum,

We are so pleased you have raised the money you need to have this operation. We wish you lots and lots of luck and hope everything goes well.

Take care of Nanny while your there she is my bestist friend hope she is a good girl haha.

Lots of love kisses and hugs to you all
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Wednesday 7th July 2010

Hello callum,

Daddy just wants you to know how very proud i am of u for tryin so hard at your physio over the last few months. You and mummy have been workin so hard.I will work hard learning them in america so when we come home i can spend more time doin them with you.

Anyway daddy luvs u lots and loves the way you have never moaned about your cerebal palsy nothing fazes you mate and i just hope this operation will hope make all those dreams you have come true.

xxx

Wednesday 7th July 2010

Hello my gorgeous boy,

Nanny is storing lots of stories in her head so we can have lots of story time in America.

love you lots,
nanny xxxxxxxxxx

Tuesday 6th July 2010

Hi Callum, I am Abigail. I am 8 years old. Your Mummy has posted on my website. I have Cerebral Palsy just like you and I have a wheelchair too. I am also going to have SDR in the same hospital as you.

I just want to wish you lots and lots and lots of luck and remember you have to work hard at your physio after the op because you want to be as independent as possible don't you.

I have a little saying that I've got from books I read. I like everything boyish and the books I read are called Beast Quest. The saying i like is 'while there's blood in my veins........' and in this case, I'll get through it! I've got a boys haircut and my room is in a space theme. I don't own a skirt or a dress or anything pink or girlie. Please write to me about how it goes for you because I can't wait to get there myself. I hope to go in December.

Best of Luck Callum,
Love Abigail.

Tuesday 6th July 2010

Hi Callum, we like your website and you have some lovely photos on here. Mummy, Daddy and Dylan must be very proud of you. xxx

Tuesday 13th April 2010