A great day at physio yesterday was followed by a not so great one today, Harry did not really want to cooperate in any way, I don’t want to make any excuses for him maybe he was just fed up and did not fancy it maybe it was something else but today was the first day I wanted to hurry up and get out. We walked back to the apartment forgetting about what had gone before because we were looking forward to relieving Harry from his concrete boots or casts. A warm bucket of water a pair of scissors and half hour later and Harry’s feet ankle and calf’s felt the cool American air once again. Then Harry had his first bath for a week and he loved it after the bath and once dressed Harry seemed to have a new lease of life shorn of his lead boots he was pulling up on to anything that he could and his feet amazingly stayed flat on the ground. To me it was if his feet had grown by a couple of inches where I am so used to seeing him on tip toes… amazing. After his nap we went the to St Louis version of Bluewater and bought Harry his first pair of real trainers, again it was an amazing moment seeing flat feet in a pair of trainer’s We held Harry’s hand and he walked perfectly straight picking his feet up and no feet turning in or dragging as he step’s forward it would have meant nothing to anyone who watched him but to us it was a absolutely fantastic sight and feeling!!!!
Two week’s post op and Harry had a real stand out day at his therapy session, his Physio today was Blair another top physio from Dr park’s team. Blair started Harry on the treadmill with a football on the floor and Harry attempting to kick it as it moved towards him it was a bit hit or miss with Harry more interested in any button that was within reach that he could press. Then some leg stretching and weight-bearing, then Blair was keen on Harry doing some walking on his stick’s and we managed to coax Harry to do an amazing Thirty feet walking, there was some wobbles and some moaning and a little bit of support but on the whole Harry managed an amazing feat and that was with both his feet still in the cast’s. Blair was really impressed and praised the work we have been continuing back at the apartment. The person who should take more credit than anyone is Harry’s mum Shane who is totally focused on getting Harry to fulfill his potential and over the last few night’s has been encouraging Harry to use his sticks and it is starting to pay off well done Mum. Tomorrow (Wednesday) Harry will have his cast’s off and I cannot wait and I pray he wont have to have any more serial casting so we will be nervous on Thursday when Harry’s leg’s are measured to see if the cast’s have done their job. Then we hopefully can kick on building up Harry’s strength. We was back at the zoo this afternoon to see the animal’s we missed on saturday and then enjoyed a meal at a restaurant over the road. 14 day’s and home!!!!!!!!!!!
No hospital physio over the weekend so Mum put’s into practise what she know’s and what she has learned since we have been here. We do feel that Harry’s progress has been slow since having the cast’s and I cannot wait until Wednesday to see the back of them, although he doe’s not moan about them to much he has not been himself , not getting about like he used to he would rather just sit in one place and play. Shane, Harry’s mum has been getting him up on his feet using his frame and walking stick’s in his home physio sessions, with good result’s he has even managed to take five steps on his own using the stick’s and considering he has the cast’s we are pleased. On Saturday we took Harry to St Louis Zoo which he seemed to enjoy but still a bit young to appreciate seeing the animals up close i think the highlight for Harry was the train ride around the Zoo he got really excited the zoo was a ten minute drive and free entry you cannot ask for much more . Sunday we had a drive out had to change a toy for Harry that did not work and picked up some shopping and enjoyed a nice roast dinner back at the apartment. This morning (Monday) we was over the hospital for 8.00am to see Michael for the first of this week’s session’s. Harry took a while to come alive and eventually Michael managed to get him going Harry managed 42 leg presses on the total gym on level 10 and that really impressed Michael who said some high school kid’s cannot do that! Harry came off the machine and was shattered his weakness still hampering him and he did get upset so we put him on the trike for a bit of a rest but he does get a stretch as we push him around. We got back and did the chore’s , Harry slept for nearly two hours this afternoon and then a trip to St.Louis galleria for some window shopping and a bite to eat.
We have now been in America for two weeks and to be honest the time has flown and we hope the next 17 days come and go just as quick as we are missing our loved ones back home , being able to stay in touch with family and friends on skype via webcam has really helped and Harry gets so excited when he can see and hear the voices of his family. When the time does come to go we will miss all the team over at St Louis Children’s Hospital they have become like a second family to us in a very short space of time. Some might say that you have had to Fundraise to pay for Harry’s treatment and that is true and without all the kind people who donated and put their self out to get us here things would be so different but the compassion, dedication, skill and hard work the team put in plus the happy vibe and atmosphere you see and feel is because in my opinion they want to change children’s life’s for the better and that’s what exactly they are doing and no amount of money pay’s for that. Back to today and when Harry woke about 7.00am and after being a little restless due to his cast legs I was wondering what sort of day to expect he was not happy with these cumbersome weights on each leg which was obvious by him not wanting to move from the comfort of the soft arm-chair . We made our way over to the hospital and I was honestly thinking that today would be a waste of time but again I was wrong and Harry even asked to go on the treadmill he did six hard minute’s it must have been like walking in glue but he did himself proud once again. He even managed some walking with his sticks assisted by Beth his physio. And he plodded on over the next hour getting on with it and not moaning once, so another good session was completed and Mum and Dad were happy.
Busy day for Harry today with two trips to the hospital the first being for physio with Michael at 10.00 and then to see Erica at 2.00pm. Harry worked hard again today, Michael had Harry strapped into a new machine to work his legs with the results being shown on a computer screen, Harry just wanted to push the buttons at first and needed some persuading to use his legs. He has to extend his leg out straight and then back down to 90 degrees but he did well. More hard work on the total gym and some floor work with some toys you sit on and use your legs to move forwards and backwards all good exercise for his quadriceps and hamstrings and then some walking with us holding his hands, his little legs where like jelly after and he could hardly support himself. After lunch and a nap for Harry we ventured out again with the hospital being our destination once more, I really wonder what goes through Harry’s mind every time we make our short journey, maybe the icy wind in his face had giving him something else to ponder as today was the day Harry was having both leg’s cast in plaster and we had told him to try to prepare him but I don’t know if he takes it in or not. When you tell him he just smiles back at you maybe he smiles because he loves us as much as we love him? Anyway Erica and Blair did a good job and Harry was ok once he got his hand on a tv remote control that Michael had found and with Harry pointing the remote with no batteries at the tv and pressing the buttons and me changing the channel as I leaned against the television Harry was happy and that made it easier for Erica and Beth. Harry now seems to weigh double with his legs in casts and now has to stay off his feet until the morning. He has been having a little moan about them and has hardly moved as if they are weighing him down but I am sure he will get used to them until they come off next Wednesday. The reason he has had to have them is to give his feet a stretch at the heel cord area to try to give him maximum range of the foot, it’s called aggressive heel cord stretching by serial casting. Hopefully if this works it will rule out surgery that is not without possible complications. Lastly we took him to Toys r us for a little treat for being so good and while out and about we seemed to get funny looks from people as they noticed Harry with both his legs in cast’s I wondered what they where thinking , if only they knew the truth and if only they asked……………………………
Harry continues his path to recovery by our daily physio session’s, this morning (Wednesday) we are seeing mad Michael at 10am, Harry has really taken to Michael and that surprise’s me because Harry is normally surrounded by female physio’s and there’s no other men that have had hands on work with Harry. Michael is a real extrovert full of excitement and praise although he has to tone it down a bit when working with Harry due to Harry’s sensitive nature. More treadmill work with the treadmill set to mimic an incline and some side stepping which Harry struggled with big time. Harry can side step around furniture but he can start and stop has he goes along but on the treadmill you can’t stop or you end up on your backside! The physio’s here at St Louis Children’s Hospital are second to none and me and Shane are taking in as much information as we can as we know we have to carry on in the same vein along with his private physio’s when we return to the UK. Some more leg pressing on a higher setting then Harry started to fatigue and became quite upset, Mum had to cuddle him, Michael managed to lift his mood by getting a special trike and Harry perked up a little bit we pushed him around and tried to get Harry to push those pedals and he did try hard . The motion of moving pedals is not something that come’s easy for a child that has had to live with tight legs for Three years but he had a go and thats all we can ask of him. You can probably tell by looking at the picture what he must be thinking. After the session we went to Kfc for some oversize chicken and then to Walmart to get some shopping having the red car makes it so much easier.
Hi Shane Chris and Harry
I have been following your progress and am so pleased and so proud of you all. It is wonderful to see Harry on the treadmill – and the photo of him standing on his feet brought me tears – and indeed the whole congregation when I told them all on Sunday. The church had a 24 prayer vigil on the day of the operation as you know – it was a like a blanket of prayer was over the church which extended to you in America. I have been in the Holy land and in every church I said a prayer for you all – I even left a prayer at the wailing wall. You have been in my prayers and thoughts every day – and we light your candle every day Harry – and your picture is by the candle so we can see your lovely smiling face. We are so looking forward to seeing you all again. In the meantime, keep strong Shane and Chris, you are amazing – we love you very much. God Bless. Kim