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.
Day14 (post op Day 10)
Day 13 (post op day 9)
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……………………………
Day 12 (post op Day 8)
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.
Message from St Mary’s church
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
A week has come and gone, a week ago I was looking at Harry looking lost in a big hospital bed wired up to monitors and now he is back to his cheeky self, acting like the operation never happened they say kids bounce back from difficult situations well Harry is proof of that. Harry is now back using his frame and his walking has become more controlled and his leg pattern has also changed and he had a good session on his frame this morning the down side at the moment is that he tires easily and that frustrates him. After the session and a lazy morning and then a nap in Mum’s arms there was time for a quick-lunch then over to the hospital for Therapy at 1.00pm . Today Harry was under the guidance of Beth she is really informative and softly spoken and Harry really likes her, more walking on the treadmill and a workout on the total gym and some balancing activities was the order of the day. Beth thinks Harry is doing well and so are we, sometimes we forget he has only just turned three his concentration level cannot be underestimated and that’s why we feel he will do so well. After the session ended we caught the Metro back to the airport to pick up a hire car just to break the days and do a bit of exploring in between physio therapy. I drove the car home nervously but got back in one piece, on the way to getting the car we asked Harry what colour car he wanted and he said Red and then he kept on and on “we get red car dad” Was all I heard for the next half hour I started to think I should not of mentioned any thing about colours. At the desk I signed the paperwork got the all important Sat Nav and then followed the sale’s rep out to the car and what a sight to behold…. The car sat their gleaming all shiny and new Harry sitting in his pushchair stared at it with a big cheesy grin looking almost embarrassed why you might ask ….The car was Red!!!!!!!
Day 10 (post op day 6)
Harry is continuing to make progress and we can see he is getting stronger each day he is now doing all the things he could do before the operation and when I look back to the first couple of days after the operation I am so relieved it really did shock me to see him looking so weak. With him getting stronger the down side at the moment is he run’s out of steam quicker but we are told this is normal and his stamina will get better every day. Shane this morning worked on Harry using the Post op programme we was given and he really did well probably to well because when we made the short walk to the hospital for todays physio he looked like he was going to fall asleep. A packet of emergency fruit gum’s where deployed and seemed to be doing the trick until Harry started his first exercise and started to cry for Mum and it looked like for a little while that it could be a difficult session But mad Mike the physio managed to turn Harry’s mood and he soon got his focus back. Harry was introduced to a tread mill something that’s gonna play a big part in Harry’s rehabilitation and a tread mill will be needed at home. Harry really took to the machine even if he was only doing 0.2 mph over 4 minuets then on to a machine that help stretch his hamstrings and then on to the tripods for some structured slow walking he really tries and he has an inner determination and we are so proud of him. We have seen Harry today sitting in a chair looking really comfortable something he really struggled with he was even dancing as he leaned up against the tv cabinet with the spasticitiy removed he has a new self-confidence and its amazing to see. He was even walking on his frame and lifting his legs like never before and showing off to our friend Gavin via skype. One thing more before i sign off is that to all our family we are really missing you all we love you all and thank you for what you’re doing and for what you have done. xxxx
Day 9 (post op day 5)
This morning Harry was wide awake at 5.45 i jumped from my pull out bed for the last time already thinking about sleeping back in the apartment tonight no more hospital noises and more sleep. Back in the hospital room i was telling Harry to talk quietly as our room mates Adam and his Mum Joanne were still asleep. Adam has had the same operation as Harry he is 4 and is really doing well he has a beautiful smile and also like Harry and many more children from the UK he is a part of a unique group of family’s caught up in a rollercoaster of emotions as they look into the SDR procedure then try to find the funds. We have become firm friends with Adam,s Mum and Dad (Patrick and Joanne) we have a lot in common and they have helped us and i hope we have helped them. Breakfast time passed we gathered our belongings together ready to go and the went down for Harry,’s physio session with a lady called Blair, Harry went through his warm up the physio’s try to keep it fun and they really work hard with the kid’s. The highlight’s of the hour was seeing Blair and Shane supporting Harry as he took small wobbly steps around the gym then we had to remind him to put his heels down and to walk slowly the heels need to come down to now get that stretch at the Achilles area of the foot now the spasticity has gone it is easier for Harry to get his heel down but in his mind he can’t so its a habit we have to break so we have to constantly remind him. Blair then tried Harry on some tripod sticks and he took some more steps while holding on to the sticks for dear life and still being held up by Blair. Blair was full of praise and enthusiasm and as a parent you hang on to her every word. We have seen progress every day and Harry is getting stronger we know this will take time and its about being positive and staying focused at the end of the day Harry is only 3 he works so hard and is so determined and we are so proud of him.After the physio finished we headed upstairs and said goodbye to our friends and the brilliant staff and went back to the apartment, Harry looked chuffed as we let ourselves in to the apartment we knew exactly what he was thinking 10 seconds later he was on the settee with the remote control in his hands pressing the buttons as if his life depended on it. He had that beautiful smile and looked totally innocent and i was just glad we was all back together.
Day 8 (post op day 4)
Hello its Saturday 8.40 pm local time and its Harry’s last night in Hospital so one more night then we can get back to the apartment and I am really looking forward to that and so is Shane. Continuing on from yesterday’s post Harry’s second physio session went well the first 10 minuets Harry has to do some leg stretch’s to get warmed up then he moves on to small basic movements of the legs like laying flat on his back and having to touch a ball with his toe’s the ball is being held a couple of inches away its little things like that we all take for granted but to be fair to Harry he gives it his all and made some good progress we then move on to a big floor mat and Harry has to roll over from side to side it’s all about strengthening his core muscles and for him to start using muscles he has never even used before. It was the spasticity in his legs that gave him his strength and that’s what held him up and allowed him to scoot about on his walker but with the spasticity gone the strength has gone to. Harry managed to complete most task’s set for him and his physio was pleased with his first day for me personally its difficult watching him struggle to do the things he used to do easily and that’s because their were so many things he could not do due to his cerebral palsy and now its like he can do even less. To be honest it was something that was explained by specialists in the UK and i have read about it many times but again I put it out of my mind not wanting to think about it but then you see it and then you have to accept it but you don’t have to like it and I didn’t. Harry has really been doing well since the op and had another unbroken sleep waking about 6am (saturday morning) the first word was Dad which made me smile because normally its a different three-letter word that begins and ends in M and has a U in the middle well Mum was his Second word of the day and the M word was then used until she appeared an hour or so later so I still have some work to do on that one. The first physio session today was at 11 it followed the normal routine and then Harry was allowed to get down on the floor and crawl about, the weakness in his body was obvious his crawling was weak and laboured he found a toy zebra a toy that you are meant to ride on by sitting on it and using your feet to move along , Harry was content just to crawl along the floor using it to support himself . Again the physio reassured us that Harry was doing ok and not to worry she then appeared with a walking frame very much like his own one and when he spotted it his eyes shone and his smile was as wide as i had seen for four day’s he went back to the zebra and began pushing it then he could not resist the lure of that frame the temptation was too much he crawled over to it and used all his strength to pull himself up in to it his legs wobbled and he fought to control them his physio was standing ready to support him but he wanted to do it himself he lurched forward taking a stride but his legs failed him he crashed to the ground and the tears flowed in bitter frustration….. what was our son thinking he thought he was coming to America to have his legs fixed and now he can’t do the things he was doing with ease how do you explain to your three-year old whats going on its heart wrenching, again I felt a lump in my throat and so did his Mum. We finished up and went back to our room and Harry fell asleep within seconds of being on the bed he slept solid for nearly 2 hours the physio clearly taking it out of him. When he woke he had a quick-lunch and some pain-killer that’s taken before all physio sessions. Another warm up session and some supported weight-bearing on his feet followed , seeing Harry’s feet flat on the floor and not standing up on his toe’s gives me fresh impetuous for the session again after warm up he found his new friend the zebra it was like his new crutch as he used it to balance as he moved slowly around the floor. We asked Harry if he would like to sit on the Zebra and he said yes i was surprised as his old spasticity would make his legs really hurt as he tried to straddle any type riding toy. We picked him up and placed him on the zebra his new legs straddled it with ease i could see the surprise in his face as his legs were forced apart from the width of the Zebra but the pain never came and Harry looked relaxed and then he did something he has never done before he pushed his feet behind him moving the toy along with ease with no pain and with his Mum and Dad looking on stunned We cheered and clapped and praised him and i felt relief as my son was doing something children younger than him can do with their eyes closed. Harry’s face lit up again he beamed as he conquered the Zebra no crying on this occasion or tears of frustration just a smile to join three other smiles . What a great feeling inside my heart it was just what Harry needed and it came at the right time. We now look forward to Sunday Physio at 11am clocks go back an hour here tonight so its our turn for an extra hour and boy do we need it!
Day 7 (post op day 3)
Another good night sleep for Harry apart from being a little restless between 1.30am and 2.30am but he settled and awoke at 6am not bad considering he had not taken any pain relief the last one being about 8pm the evening before. Today (friday) was a day that i(Dad) had been anxious about for a long time as it was the first time Harry was going to be getting out of bed since the operation today was a day that had been in my thoughts long before we even arrived in St Louis i was so unsure how Harry would be ? How he would feel inside and him not being able to tell us exactly what he is feeling. Well the moment came at 8.30am when the physio turned up her name was Barrie (yeah i know what your thinking) anyway she went over in fine detail how to pick Harry up without hurting him using a teddy to demonstrate then it was time for her to show us with our precious son she rolled him on to his side and with one hand supporting his shoulder and head and the other under his bottom she brought him upright on to the edge of the bed. Nothing prepares you …….. Harry looked like a rag doll barely being able to support his own head he had to really fight to get those neck muscles to work he got upset and looked uncomfortable i felt awful and so did Shane. He gradually seemed to get himself together finding some inner strength from some where deep inside his little body and then he had to lay down. Then it was Mum,s turn to show the physio that she could do it and like a expert she got him up straight and the in to his pushchair again the tears flowed and i bit my lip. We took Harry for a 40 min walk and during the walk we went to the children’s gym and Harry forgot the tears and wanted to get out of the pushchair to explore but he was not allowed so more tears. After the walk it was back to bed and some play time and then sleep he has his second session at 2pm today !
Harry had a good night he woke at 6am and wanted mum so dad had to think of a few diversion tactics until she appeared and when she did Harry had fallen back to sleep so all was good. He then woke again at 7.30am and had the biggest smile because mum was sitting next to him. We then have to get our entertainment heads on for the next few hours in between some juice and light breakfast. Harry met his orthotic specialist today and he cast his legs for his new braces that will help his legs. Harry had all his drips removed today and is now taking his medicine by mouth so we are moving in the right direction.We have noticed Harry looks far more relaxed his legs are getting in too positions he has never been comfortable with and even his voice sounds louder it’s if he has more puff. Harry went on Skype and said hello to his family and friends back in the UK that we are all missing and that cheers everybody up. tomorrow (Friday) Harry starts his physio so lets see what tomorrow brings……. Sorry to keep you waiting with this post i did the original last night but lost it at a touch of a button take care all.