A very quiet day today everything grinds to a halt on Thanksgiving day it was so quiet outside on the main road that Harry slept until 7.45am so much better than the usual 6.30am. No physio today as the physio staff where on a public holiday and spending special times with their family’s. Shane put in some extra work with Harry and we spent the morning doing housework and catching up with family on the computer and then went for a stroll round the very quiet street’s of St Louis.
Just a small post today……It was Harry,s last session with the fantastic Beth today (Wednesday) and all of us will really miss her I have seen a special bond build between Harry and Beth, she has such a calmness about her and Harry trust’s her and has come on so well with her guidance. First Beth had Harry wiggling his toe’s to pop bubbles then a seven and a half-minute stint on the treadmill then on to a car you sit on and use your legs to move forwards and then in to the soft play area for Harry to do some climbing which he loved. The hour soon passed and we was saying our good bye’s to someone with a special talent, so thank you Beth for all your help and good luck.
Looking back, the last Three week’s since surgery has flown past and Harry has done really well, better than I thought was possible and we are now really looking forward to a brighter future. Not being able to walk is something you can only ever imagine and it is a task that most people do without even thinking. If you could imagine what it must be like not being able to walk and how your life would be different and how your family’s life would be different and to be dependent on other’s, in my opinion it has to be one of the worse disabilities you could possibly have…. to deal with being in a wheelchair for the rest of your life watching the world go by without you. It must take a special type of person to ever come to term’s with that predicament and there are many that have but im not sure that I could. And now we push on and try to entice Harry to work hard so he can look forward to being able to join in and play with his brother and sister’s and cousin’s that he admire’s so much but has watched them have fun from afar. And work hard he did today under the wing of the cool calm and collective Beth, Beth had Harry walking up and down stair’s and off of steps and curbs all things he will need to be able to master if he is to make the progress that we so hope for, there was some sitting and standing exercise’s Beth said more than once today how Harry surprise’s her in his determination and his ability to overcome the task’s and to hear that, it really mean’s so much to us. Balance is one thing Harry has to find and we are doing all that we can to help him, he is building new muscle all over his body and this will help achieve the balance and give Harry more confidence to perform at a higher level.
Three visit’s to the hospital today the first at 8.30 for Harry to be measured after spending the weekend in his splint’s we was met by Erica and I walked with her to the casting room and as she had all the equipment out ready to cast I immediately thought that they fully expected Harry to not reach the required measurement range and the recasting was a formality. Harry laid on the bed and must have thought not again as his eye’s locked on to all the bandages and packet’s of powder and other various bit’s and bob’s. Blair got down to the nitty-gritty and took the measurements and then Erica double checked and Harry had come up trump’s because he had hit the range of movement required so happy day’s and Erica and Blair put your casting equipment away. Me and Shane were chuffed and felt really good all the hard work over the weekend had paid off.
Next up was physio with Michael at 11.00 another good session with Harry walking on his sticks riding on the tricycle and on the total gym for the leg press work out. Harry seems to have come to terms with Michael over the last few session’s and that is credit to Michael adapting himself to Harry’s needs. These session’s cost around £230.oo an hour that’s why we have felt Harry need’s to get the maximum benefit, there is nothing that I have seen that compares to this back home the most Harry will get is a 6 x 1 hour session’s with a NHS physio and with no equipment.
Our last visit was to at 3.30 pm to meet Dr Park for one last time before we head home next Monday the 28th. He wanted to see how Harry had progressed and to make sure he was fit and healthy to travel home next monday the 28th. Harry did not disappoint Dr Park and Dr Park did not disappoint us in his valued assessment of our beloved son. Dr park has given us great hope for Harry’s future with his prediction’s of what Harry could achieve, and with the right guidance and lot’s of hard work we feel he will achieve all his goal’s, because we have been given this chance by so many wonderful kind-hearted people, family and friend’s and stranger’s who have come together as one in these past six month’s and sent us on an unbelievable journey 5000 miles away from home to a wonderful team of professionals who have been superb in the way they have treated Harry, we owe it to each and everyone of you to make The Dream come true…. We wont let you down.!!!!!!
Harry did not sleep very well friday night and woke several times then he said his night splint’s where hurting him so we ended up taking them off he then settled waking about six and got in with us for another couple of hour’s. The day started bright and sunny we met our friend’s at the Zoo in the afternoon it was our third visit Harry just wanted to go on the train I think he enjoyed that more than anything he was walking on his frame the majority of the time and even went up a long slope it took him longer than normal but he would not be beaten by it and every time I asked him if he wanted a carry he would say “No dad me do frame” His strength and stamina is definitely returning and that is really encouraging. Harry’s mum Shane continue’s to put in all the hard work with physio everyday back at the apartment and this will continue when we get home I am sure it’s Shane’s determination to push Harry through his physio programme that has enabled him to get to somewhere near pre op strength and stamina already. Talking of home we are counting down the day’s now we just want to be reunited with our other children and our family’s and good friends we miss you all very much. Sunday we took Harry to see Father Christmas and with Santa holding Harry I was not sure how he would be but he was fine, funnily I think my Dad having a beard helped the situation 12 months ago I think Harry would have gone Ballistic but he has really changed socially. Even since the operation he seem’s more sure of himself and definitely more cheeky. Tomorrow (Monday) we are back at the hospital to see if wearing the splint’s over the weekend will have avoided Harry from being recasted finger’s crossed.
What a difference a day make’s…… As we walked over to the hospital for our last physio session before the weekend we did wonder how Harry would be as the two previous day’s had not been too good. Michael was waiting for us and he took Harry in to the Gym and strapped him into the Bio Tec Machine and Harry did both legs extending leg out from knee and back down with the machine giving resistance against the legs. Michael kept this session on the move by mixing up the session and moving Harry from one piece of equipment to another and that kept Harry busy and he seemed to have more focus he went around the assault course and on to the treadmill then in to the soft play. We came out feeling a lot better than when we went in so well done Michael (good job Bud) as they say over here. In the afternoon we took Harry to the Science Center and he was in his element with computers to play with and button’s to touch it was difficult to get him home we had to promise him we would go back.
Today (Thursday) we walked over to the hospital and as I mentioned in Tuesday’s post it was to be today that Harry would have his leg’s and feet measured and to find out what the serial casting had achieved so as you can imagine we was a little nervous as yesterday was a significant day with the cast’s coming off and seeing those two lovely flat feet. Michael met us promptly and made a big fuss of Harry and his new trainer’s and Harry walked in on his frame with real purpose. Michael positioned Harry on the treatment table for the measuring and from that moment everything seemed to go wrong Harry struggled and was not happy again , Michael jotted down the result’s and then tried to placate a very upset Harry who just wanted to touch everything that he should not be touching the more Michael tried to appease him the worse he became. Blair came in to the room to look at the results and then Beth and then the new’s we had dreaded, although the casting’s had given Harry increased range in the ankle they felt it would be best for Harry to go back in to cast’s until Monday at least. With us being told the complete opposite new’s that we wanted and the fact Harry was not doing what was being asked was too much for Shane and she blurted out something about Michael not being the ideal physio for Harry as Harry was not responding to his way’s and method’s like he did for Beth and Blair. I looked at Michael and he looked crushed his face told a story and it was the first time I had seen Michael look this way and I felt for him. Beth and Blair said it was up to us if we was to go ahead with the recasting and left us then Michael apologised to us for not being able to motivate Harry in to completing his task’s, with that Shane left the room in floods of tear’s she never wanted to hurt Michael’s feelings but felt she had done. I explained to Michael as I had done a few day’s ago that Harry is a sensitive little soul and has alway’s had female physiotherapist’s and just seem’s to respond better to female’s and it was his not his fault, Michael took what I said onboard but still looked upset. I know from what I have read and heard from other parent’s how good Michael really is he has a wacky over the top sense of humor and alway’s give’s 100 percent and his fellow work colleague’s hold him in high regard but with Harry it was not happening as we had hoped and when your time is precious you just want your child to flourish and we know when we return home the expertise that has been across the road from us will be many mile’s away. Laura from the Orthotic’s team came in to the room with Harry’s new splint’s two pair’s one for day’s and a set for night’s they are to be worn to maintain the heel cord stretch and hopefully prevent Harry from further surgery. Shane came back into the room with puffy eye’s and Michael managed to get Harry standing on a steep wedge to give his leg’s a stretch then Erica appeared and asked what were the result’s of her casting’s I told her and then said what Beth and Blair had suggested and how we had been so elated yesterday and now so deflated today, she came up with an idea that Beth and Blair said was ok and that was for us to put Harry in to his splints straight away and use them until Monday and come back in to be measured and if this fails to give Harry the required range then he would have his leg’s recasted later that day. At least it would give Harry some time off over the weekend with out the cumbersome cast’s but he will be wearing the fibreglass leg splint’s. Harry finished off on the total gym but was still unhappy and for the second day running I was glad to leave. We purchased a second pair of trainers to fit over Harry’s splints and Harry managed over four hour’s in them. It has not been one of our best day’s in St.louis but no one said it was going to be a walk in the park and I alway’s felt that we would have difficult day’s and this has been one but it’s how you deal with it and how you carry on, their might be tear’s of frustration from anyone of us but there are also tear’s of joy and I am sure the latter will prevail!!!!!!
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.