THE ST LOUIS DIARIES

 

 

Hi Everyone, thanks for dropping by to check on Henry's progress. We will try to keep this page updated as often as we can.

25/04/09:    FAREWELL ST LOUIS, IT'S BEEN EMOTIONAL: We're now packing up our stuff and trying to figure out how we get all the extra stuff we accumulated into cases that were packed full when we came?? Henry has had his final therapy sessions and final check up with Dr Park and has been signed off. So that's it we can now think about going home after a very emotional month. We are looking forward to seeing our friends and family again and getting back to our own house, but we have made lots of new friends here in St Louis and will be sad to leave them, although we will make sure we stay in touch until we return.

                    So to pick up where we left off, Henry had his final therapy session with Michael on Thursday (he had made Michael a thank you card which was well received). When we arrived Michael had Henry's shiny new frame ready for us so we spent quite a lot of the session getting Henry used to it. Henry's new frame now has four wheels and the front wheels can be unlocked so that they move. This means Henry doesn't have to stop and pick up the frame when he wants to turn and will hopefully lead to him walking more fluently. The other added extra is a seat which can be put down when needed. At the moment this is a real bonus as Henry gets tired very quickly, but as his strength improves we hope he will need the seat less and less (it will also mean he doesn't have to balance on the back bars of his frame which he used to do with his old walker - so this will also put a few grandparents minds at ease who used to worry he would fall off!!). We finished therapy by putting Henry in a machine to increase the strength in his legs. He did enjoy watching how the chart on the computer changed as he kicked his leg.

                    On Friday we had a final meeting with Dr Park to make sure Henry's incision was healing well and to answer any questions we had before heading home. It was nice to see him and he gave us plenty of advice concerning our journey home (what medicine to give Henry, how he should sit for the journeys, etc). He told us that he thought the scar was healing great and we would not need to give Henry any more antibiotics and just use the cream for another week or two. This answer remained the same for each of the 4 or 5 times Mummy asked it!!! ;o) So with minds at ease we bid farewell to Dr Park and promised to send him video footage in 6 month and return within a year.

                    We arrived at the last therapy session with Beth and Henry had made a her a combined birthday and thank you card - Have a lovely birthday on Sunday Beth! Michael also turned up to say goodbye and had bought Henry a hospital T Shirt so he won't forget everyone which was lovely, Henry was pleased. During therapy Henry had to be filmed walking in his new frame and have final measurements taken for the hospital records. Henry also had some fun climbing up into a tree house and sliding down a pole, like Fireman Sam. Following that, Beth got Henry to try out a scooter board and give Will a race (we will try to make one when we get back home). We finished by choosing instruments and having a jam session. Will and Granny were on the drums, Mummy on the tamborine and Henry wanted to be lead singer and guitarist, which was ok because he had to stand up through it all. I didn't recognise the song, but it was quite loud! After chatting with Beth and making sure we didn't have any more question, we said goodbye to the excellent therapy team who have been amazing through this last month. We look forward to seeing them when we bring Henry back for his follow up appointment.

                    In the evening we returned to the Cheesecake factory to have a final night out with John, Shannon, Jack and  Nicola. We had a lovely time and again the food was great and in very large portions. This time we at least got to order some cheesecake afterwards, even though we didn't all finish it! Once we had finished, the kids ran around like crazy inside the shopping mall before we headed home and started to think about packing up our stuff. It does seem like this month has flown by - probably because we spent longer in hospital than we planned, but we have had some good times and the people we have met have been really lovely. Here's to next time St Louis. Simon x (P.S. Go Cardinals!!!!)

                    So this is it, we go home tomorrow and I feel like crying!! I can't wait to be home and be with the rest of our family and friends (thank you so much to our family who are here and who have been here we could not have done it without you xx) and I am so sad to leave the fantastic friends we have made here. Shannon, Jon, Jack and Nicola. Thank you so much for being you, you are all  really special people to us and you will always be xxx. Thank you to all the team of therapist and nurses at St Louis Childrens Hospital and everyone in our hotel for everything you have done for us. Lots of love Polly xxx  

 

 

23/04/09:     HENRY THE PIRATE AND OTHER STORIES: We have been pretty busy these last few days with no sign of slowing down, so I've got a few minutes to update the diaries. Yesterday was an early start because we had an appointment with Dr Tychsen at 9am. This meeting lasted all morning because he wanted a series of tests to be performed to give him more of an idea of what Henry can see. For the most part Henry was very good, except we had to do some Flash VEP tests which involve sticking electrodes to his head and patching his eye. From similar tests in the UK we knew that Henry would hate it and even trying the 'let's dress as a pirate' approach, didn't work - he was not happy! Anyway, we got the tests done and will see Dr Tychsen again this afternoon to go over the results and see what he thinks.

                 We had a therapy session afterwards with Michael, but didn't have Henry's frame because we weren't expecting to have been all morning in the hospital. Anyway, we got Henry to do a bit of work even though he didn't really want to walk in anything except his own frame. We also had a chance to re-adjust his new DAFOs because they were rubbing him a bit above the ankle. Now they fit really well and henry is wearing them for most of the day without any problems. In the evening, Mummy & Daddy managed to score some free Cardinals tickets and really enjoyed their first live game - and the Cardinals cruised home against the NY Mets winning 5-2. Daddy couldn't believe a beer was $8.50!!

                Today (Thursday) we had booked tickets to finally go up the Arch and even Mummy came!! The boys thoroughly enjoyed it and loved being at the top. Henry was convinced he could see the hotel - we weren't so sure, but he was looking in the right direction. Mummy spent the whole time at the top sat on the floor sweating and feeling sick - but she did do it - well done Mummy!!!! Anyway, I better sign off because we have to meet Dr Tychsen and then have an hour therapy afterwards with Michael (our last session with him). Simon. x

21/04/09:     HENRY'S NEW SNEAKERS (SORRY TRAINERS): Today was the day Henry was getting his new DAFOs fitted during his therapy session. We had already bought his trainers (a bit on the larger size) and hoped they had enough room to fit in his DAFOs. Beth met us for therapy and after walking in his Kaye frame into the therapy suite, we sat down to size up and trim the new DAFOs. Henry liked them because they are red and have pictures of a rock band on the strap. Once they had been trimmed to size, Mummy and Daddy practiced putting them on Henry's feet and tried his trainers on too. They seemed to be a really good fit and so Henry had a walk around the therapy room in them to see if they were ok. He didn't seem to be uncomfortable so that was good. His foot did look like it may be turning in slightly though. We couldn't work out whether it was because he was tired and not using that leg as much or it was becoming a problem. Beth tried a de rotation strap and the results were still a bit inconclusive, so we will experiment some more with the strap over the next few days.

                    So Henry was pleased with his new DAFOs and new trainers and after finishing therapy with a bit of balancing on the wobble board, marching in his frame and a little bit of football, we headed back to meet up with Shannon, Jack and Nicola who had been swimming with Granny, Grampy and Will. We all then headed to Union Station where the kids fed the fish on the lake before having some dinner. They had a live band playing and so the kids had a boogie while waiting for the shuttle bus and Henry did some top wheelchair dancing while showing off his new trainers. Simon x.

 

                    Henry has some cool trainers that he can walk in at last!!  It is so great to see him with trainers on instead of always the same Ortho Boots. Don't get me wrong the Ortho Boots are very good but to see Henry in regular trainers the same as any other child would wear is really great. Polly x

20/04/09:     THUMBS UP FROM DR PARK: Well this afternoon we had a double appointment in the hospital. We first had an hours therapy with Michael and then we had our follow up appointment with Dr Park. Henry was quite excited about seeing Dr Park again and was in a cheeky mood for most of the day. This meant we had a good therapy session. Michael met us in the reception of the Therapy suite and from there Henry walked through the entire department and out to the stairs at the back using his walker. At the stairs, Michael wanted to see how Henry got on walking up and down the steps. Although he was always worried he'd fall and still using his upper body strength lots, Henry did manage to get up and down a whole flight of stairs with Michael's assistance.

 

                        We finished the session by walking back out to the gym and experimenting with the treadmill to see if by lowering the bars, Henry would bear more weight through his legs. We came to the conclusion that the bars need to be around the same height as his frame as at the moment, he needs support within his comfort zone. Overall though it was a good session for Henry and it emphasized the need for Henry to be back in his frame and walking to build both his strength and his confidence.

                        Following therapy, we headed to Dr Park's office for our follow up appointment, carrying our list of questions we wanted to ask him before we leave on Sunday. When he came into the room with his entourage, one of the first things he wanted to do was see Henry walk (and look at the incision). He watched Henry walk across the room and out into the hall to choose a sticker. Then he asked Henry to crawl, stretch up on his knees and walk on his knees, before examining his legs more thoroughly. He was happy with his walking and liked how straight his legs are and how flat his feet were. In fact, he thought that if we could keep his legs straight and feet flat using lots of stretching and therapy (particularly the hamstrings), we may avoid the need for any muscle release surgery in a few years.

                        Regarding the incision, he was happy with how it looked but would like us to keep it covered and finish the course of antibiotics over the next week. He was very apologetic that we had the worry of the infection but said he thought that the scab may have been knocked off and Henry was unlucky enough to have something get in. Although he was on holiday, he had been keeping an eye on what was happening and said he was sure it would be ok but still sorry for the worry it had caused us.

                        Anyway, we then reeled off our questions and he answered them comprehensively. He once again put us at ease and gave us advice on what exercises to concentrate on (lots of walking!!!) and tips for the long journey home. At an earlier appointment, Dr Park had shown an interest in Henry's nystagmus. So we asked him whether he thought anything further could be done to correct Henry's vision. He told us that it was certainly possible and he would get us an appointment with his colleague Dr Lawrence Tychsen who specializes in visual impairments of children with CP. We were chuffed with this and even more so when after we had left we received a note scheduling the appointment for 9am on Wednesday morning. So that's another thing to look forward to. Overall, we were really pleased after seeing Dr Park and he was still really positive about Henry's future. He would like to monitor Henry's progress and see some more video footage at least in 4-6 months. We will do this for sure and probably return to St Louis to see him in a year. Simon. x

                       Yes today was definitely  a good day! After being very anxious about the appointment with Dr Park we all came away feeling once again reassured that everything is good and it will be ok. Henry was brilliant in therapy and on top form with Dr Park. I was amazed at how flat his feet were when we were walking across the meeting room. Everything about the way Henry walks and stands has changed and changed for the better, it is brilliant. We know that he is really weak and we know we have a long journey ahead of us but the little journeys that Henry makes using his walker are so different and so great that we know it is going to be all worthwhile. When we got back to the hotel this evening the boys were playing with the bubbles, it was lovely. William was jumping all over the place trying to pop any bubbles that Simon made and Henry was stood in his frame jumping around really excited and trying to pop the bubbles too. For a few moments I could forget about everything that has happened in the past few weeks. All my fears about the surgery making Henry worse and the fears for what the future will hold. I just watched my boys playing and everything was good, nothing has changed that much. William is still the wonderful little brother who jumps around excited and crazy as ever and Henry is still the precious older brother who can still stand in his frame and still join in and have fun just the same as every other little boy in this world! I am a very happy Mummy xxx

19/04/09:     A RAINY WEEKEND IN ST LOUIS: Well as far as the weather has gone, this weekend has been a bit of a washout. We have taken the opportunity to chill out a bit and try to sneak in some exercise for Henry. Yesterday we did a little but of playing, but had a lot more success today. As well as some half-high kneeling while playing with lego, Henry did some more walking in his walker. He walked out of the room and along to the fire escape where Daddy and Will were playing football. After some kicking while sitting on the steps, he then walked back to the room. Hopefully this bodes well for our last week of therapy which starts again tomorrow.

                    Because of the rain, on Saturday afternoon we took the kids to the Science Museum. They had a great time and enjoyed the 'structures' section where you could do lots of hands-on building. Their most favourite section by far though was the dinosaurs!!! We had to drag them away from the huge animated T-Rex and Triceratops. We couldn't escape though without having to get them their own 'Build A Bear' dinosaur (like the Bear Factory in the UK). So they now have two dinosaurs they are very attached to. Henry has a Pterodactyl called Henry (who likes drinking Daddy's drink apparently) and Will has a Tyrannosaurus Rex called Henrietta.

                    Anyway, we've had a really nice weekend without doing a lot. The boys have been well behaved and we've been out for dinner twice - we had nice steaks on Saturday and went to the Cheesecake Factory today, which serves such big portions for the meals, we were all too stuffed to eat the Cheesecake!! - Mummy still ordered take away cheesecake though ;o) So tomorrow sees us start our last week of therapy and we are also scheduled to see Dr Park in the afternoon which we are looking forward to. We'll keep you posted. Simon x.

17/04/09:     NEW FEELINGS ALL OVER: Well today was a beautiful day in St Louis - very hot and sunny. We had therapy in the morning so made plans to re-visit the zoo in the afternoon. In therapy Henry's new Kaye walker arrived and although it was the right height when fully extended, it doesn't give Henry any room to grow (and as we live so far away, we want one that will last a while). So we have asked for the next size up and are hoping it will be delivered by the time we leave (fingers crossed!). During therapy, Henry didn't improve on yesterdays star performance as he looked a bit tired and seemed pre-occupied. He still managed to do some walking in his frame and practiced some pull to stand from the floor. When therapy was over Daddy treated everyone to a trip to the zoo - well, it is free ;o) We had a lovely time and saw the animals we didn't have time to see last time. William liked the Tigers and Zebra, Henry liked the Zebra and Elephants and Mummy & Daddy loved the Hippo enclosure - it was ace. After the zoo, we headed out for something to eat at Landry's in Union Station where we sat outside and listened to a live band playing by the lake which was nice - although the seafood wasn't as good as back home (but I guess we're not by the sea).

                    Although we had a good day, Henry has been really anxious for most of the day and looking like he is in a bit of pain. From his actions we know that it is because he is trying to hold back his bowel movements because they used to hurt him before the surgery (due to the tightness in that area). These last few days he has needed to go a couple of times a day. This could be because the surgery has released the tightness and he is getting more 'normal' feelings, but is still scared of it hurting and so tries to hold on. Of course, it could be the medicines we are flushing through him making him go more often. I know this isn't the nicest of subjects for an update, so sorry about that, but the people with CP kids we have spoken to have seen the same problem and also noticed a huge difference post-op. It has been something that has impacted our lives for the last 4 years and so we are hoping this could be yet another positive benefit of the surgery - we'll wait and see. Anyway we now have the weekend off to chill out. It is supposed to rain (typical) so we're not sure what we'll get up to. We'll try to put an update for the whole weekend up on Sunday. Simon. x

16/04/09:     WHAT A DIFFERENCE A DAY MAKES (24 little hours, Brought the sun and flowers where there used to be rain, etc, etc): Today is a very good day!! Henry was amazing at therapy. I was really anxious as to how much the infection had put him back, originally we hoped that by the time we return to England Henry would be up and about using his Kaye Frame the same as he was before we left. However once the infection took hold it seemed to us that that would not be the case, Henry seemed to struggle a lot with moving and every movement seemed to be painful. Today Henry proved what a little fighter he is.

                       We had therapy with Michael and Christie and it was great. Henry was in a really positive mood and had lots of fun. He started by doing squats on the gym 26000 and once we found a level he was comfortable with he was well away and really enjoyed showing Michael what he could do. Michael suggested trying to walk in his Kaye Frame next and so Henry got started and OH MY GOSH he didn't stop! He pulled him self up and started trying to chase Daddy to kick a football. The only problem was he got so carried away with walking he forgot to take the frame with him and lost his balance and fell backwards but this was not to frighten Henry. Michael helped him re adjust his position and off he went again with a massive smile on his face and enjoying every moment. Every now and then his legs went from under him and Christie helped him sit on a chair for a much needed rest before he was up and chasing Daddy again. I must admit I was an emotional wreck following and crying I just couldn't believe what I was seeing. Henry has been so poorly over the last couple of weeks to see him so happy and so able was just one of the best moments of my life!! He was walking in his frame like he has never walked before, he wasn't stumbling or crossing his feet or struggling he was just walking it was amazing. Henry has a long road ahead of him but together we are going to conquer it and I know we have done the right thing. Love Polly x

 

                    At breakfast and dinner this evening, we met the Robel family who are lovely and have a little boy called Luke (who is really cute) and he had SDR with Dr Park two years ago. Luke is 6 and has just started walking unaided which is amazing. Dr Park predicted he would do it, but no other specialist thought he would. So we got talking and sharing experiences and realised how much we have in common and it was great speaking with people who really understand the place we are in. It is also encouraging to know that although we have only just joined the long road they have been on, the benefits are so amazing, the road seems to be the right one to be on. Anyway, we have exchanged details and hope to keep in touch with them. So we're all still chuffed about today's progress and I think we will all sleep well tonight (especially H as he did so much walking!!!). Simon. x

 

15/04/09:     HENRY THE PIN CUSHION GETS BACK TO THE HOTEL: Well where do I start describing the last 24 hours or so. It's been emotional that's for sure. Last night was particularly tough on us all. We settled Henry early because we were all tired and he went to sleep about 9ish. Mummy and Daddy also got their heads down on their (not so comfy) chair beds. About 10pm it all started to go wrong. Henry's IV machine started bleeping that now familiar bleep which means it is not dosing correctly. The nurse came in to confirm the worst - he was going to need his 4th IV drip of our stay.

                    At first one of the nurses on the ward thought she could get a line in, by the time she began to try, H was already distressed and shouting and sweating. By the time she made her first puncture, Henry was screaming and wouldn't stop shouting 'you're hurting me, you're hurting me!' After wiggling the needle under the skin and not finding a vein, she tried again on the back of his hand. Again she was unsuccessful in finding a good contact, but had a good wiggle of the needle for a minute or two, all of which caused Henry no end of distress. At this point the IV nurses were called for who's only job is to get these drips set up. As the IV nurse arrived she was confident she would be able to get one in Henry's foot as she could already see a good vein. So as we all tried to calm Henry as much as we could, she plunged the needle into his foot and once again could not find anything. She told us that he had a rolling vein and tried to explain what was happening but Mummy soon gave her an earful and told her to just get on with it as Henry was still really distressed. The last attempt was on Henry's wrist and again it looked unsuccessful at first, but after a few tried, we finally got the line in and a good flush. The nurses taped it in place with as much tape as they could and we were able to give H lots of cuddles and wash and change him. Afterwards, he probably calmed down quicker than Mummy and Daddy and told us that he thought the nurse was silly because she tried to put the IV in his foot when it should be in his hand!

                Anyway, with the drip in we settle down again and were just dropping off when we heard that dreaded alarm again. It turned out that the way they had it taped (as they had used lots) was the problem and they need to re-tape it. Anyway, as we woke Henry back up, he wasn't very happy and (understandably) freaked out when anyone got near his hand. By the time we had his IV re-taped and settled back in bed it was silly-o'clock in the morning and we were all exhausted.

                Morning arrived and our hopes of any sort of lie-in were never going to materialise as we were visited by the nurses and specialists. We were told that they may try Henry on oral antibiotics but would probably want to monitor him overnight with an IV still in place. After the night we just had, that was the worst possible news. The first round of oral antibiotics was at 8am and although he wasn't happy about it, Henry took them ok. So the day wore on and it was a lovely sunny day which meant Henry could show Granny and Grampy his favourite place - the roof garden. We then had therapy at 1pm with Michael. He took Henry down to the gym even though it was tricky as he was hooked up to his IV machine. Anyway after some time on the treadmill we heard that sound again!! A  nurse was called for and the news confirmed that the IV was out again! Henry was devastated and took some calming down. Michael helped enormously and the took the opportunity of Henry not being hooked up to take him on a whirlwind tour of the hospital on the therapy bike.

                 When we arrived back to the ward we told the nurse that we really didn't want Henry to have another IV if they were giving him oral antibiotics as he is too upset. We also mentioned that if he was going on just oral antibiotics, we may as well leave as we will be back in the hospital everyday for therapy, so they can keep a close eye on him (and it would save us a small fortune). Anyway, our nurse Michelle did a great job and after speaking with the specialists, told us that as long as Henry took his next lot of oral antibiotics ok we could go back to the hotel. After hearing this, Henry was stoked and took his medicine without too much fuss. So that was it. What a relief. We packed up our things, headed back to the hotel and were soon sat outside in the sunshine with some cool drinks (a much needed beer for Mummy & Daddy). Now Henry has seemed to quickly readjust to life back at the hotel and doesn't seemed too mentally scarred by the awful IV incident. In fact, once we got back to the room, he wanted to use all his equipment from the hospital (syringe, tape, stethoscope) to insert an IV into Grampy's foot!! he particularly enjoyed the bits where he pulled the tape from his hairy legs!! - Sorry Grampy ;o) Anyway, here's to getting back on track! Simon. x

                 Well what can I say, Simon has said it all really. The kind nurses have been brilliant at the hospital especially Julie, Michelle and Katie. If you read this THANK YOU ALL SO MUCH for helping us all during a very difficult time and a big THANK YOU to everybody else who has helped us over the last couple of weeks. We hopefully now will only be visiting the hospital for our daily therapy with Henry's therapy friends. Henry and William have been amazing. Henry has gone through so much over the last couple of weeks but I truly believe that we have done the right thing for him. The other night Henry was in his hospital bed really excited about how his new legs can move, so surely that can not be  a bad thing. We have a very long way to go and Henry has a lot of hard work ahead of him, but we are going to try our very hardest to help him achieve the best he can, he deserves it. William, well William is the best little brother H could have. He really cares for him and has handled this really hard time brilliantly and has cared for his brother and really enjoyed spending time with his Grandparents (who have all been amazing too, THANK YOU WE LOVE YOU ALL SO MUCH). Love Pollyxxx 

14/04/09:     ANOTHER DAY, ANOTHER IV: Well we are still in hospital and the doctors thinks that we should stay with the IV antibiotics for another 24 hours at least. We kind of expected that, but it made it more difficult because Henry managed to pull his drip out again this morning so we had to put another one back in. Cue the screams. Actually, apart from the needle going in, he was pretty good today. I think he is finally just accepting what is going to be done and letting everyone get on with it. He has been the same about having his 'vitals' checked throughout the day - he used to hate having his blood pressure checked but is now just holding up his arm when he sees them roll the machine in. Anyway, another day pretty much like yesterday with lots of playing lego with his Grampy and Will, a therapy session which was limited by the IV drip in his arm and touring round the hospital. He also managed to bag another round of presents including more lego and went off exploring on his own in his chair and was a hit with all the nurses on the floor (his lovely nurse Julie took him round to meet all her friends). So here's hoping we can get back to the hotel tomorrow, but only if the doctors are sure everything is ok of course. Simon x.

13/04/09:     BACK IN HOSPITAL: Well, we were right to be concerned about the swelling and redness of Henry's scar. On Saturday evening after taking and keeping down his new antibiotic, the incision still looked angry and so we brought him back to the Children's Hospital for assessment. After studying the wound, the neurosurgeon on call told us he would like us to be admitted to the wards so that Henry could get antibiotics via an IV drip (as it would work quicker). He told us he thought the wound was infected but it was only superficial and near the surface. By getting antibiotics into him quickly using an IV drip, we would hopefully avoid the infection spreading and making Henry really poorly. So it just happened that we were admitted to the same room in the hospital we had last week. We then had the very noisy task of getting the IV in place. With Mummy, Daddy and two nurses holding him down, we got the drip in place and settled Henry down. Once we had explained to him that his new medicine pump meant that he didn't have to swallow lots of nasty tasting medicine he was fine and became interested in how his new machine worked. We then settled down for our first night back in hospital (it now seems like we haven't left) and tried not to think about the $1000 per night it costs stay here!

                    So Easter Sunday started in hospital, but Henry did find that the Easter bunny had found him in hospital and there were lots of eggs around his room. His scar did look like it had improved and the neurosurgeon agreed and thought that it had reduced by at least a third. However, he also told us that he expects us to be in here for another few days yet just to be sure and to be honest, although it is pricey, we would rather be here, surrounded by the professionals, making sure Henry's health is everyone's top priority.

                    Once we had adjusted to the fact that we would be here for a while yet, we tried to make sure Henry (and William) had a nice Easter although he was in hospital and this was helped by the arrival of John, Shannon, Jack and Nicola. They arrived bringing a banquet for us to enjoy in Henry's room together. As we were enjoying our impromptu picnic the Easter Bunny made an appearance and gave toys to all the kids. We then went to the garden on the 8th floor for an Easter egg hunt before going into the playroom to do some egg painting. When we returned to the room, Henry had been left lots more Easter gifts to play with including another new blanket.

                    As the afternoon wore on, Nanan and Grampy had to make their way to the airport for the journey home. John drove Nanan, Grampy and Daddy to the airport, while Shannon bravely took charge of William, Nicola and Jack and went swimming. It was hard saying goodbye to Nanan and Grampy as they have been rocks through the last two testing weeks, especially as Henry is now back in hospital. Granny and Grampy arrived safely though and after dropping their bags at the hotel, caught the shuttle to the hospital to see Henry. It certainly was a bit of a tonic as Henry had been pretty lethargic in the afternoon and didn't want to do anything, but soon wanted to be up and in his wheelchair showing Granny & Grampy around the hospital.

                    Easter Monday began with a visit from Dr Park who had been away over the weekend but wanted to see Henry's incision for himself. He agreed with the treatment we had been given and was very apologetic about the additional costs being incurred, but stressed the importance of fighting the infection at this early stage in case it gets deeper into the wound. In his opinion we will still be in hospital for another couple of days at least. Well we know this is the best place for him, so we may as well get used to it. At least Henry has been much perkier today. He has been to the Ronald McDonald room to play with his grandparents and has also had some inpatient therapy! His IV had to be taken out because it was looking a bit swollen, so we took the opportunity to do the therapy while he wasn't connected to any machines. He did really well considering and showed some good sit to stand, assisted walking and reciprocal crawling. As he was crawling he found a discarded Easter basked and decided it would make a great crash helmet...

                ...After therapy we had to get another IV into him and he coped a bit better this time as he knew what was coming, but was still vocal enough that most of the ward knew what he was having done ;o) So now Henry has had a big roast beef dinner and we are settling down to another night in hospital. The good news is that he is in good spirits and we think the infection is on it's way out. However, the bad news is we don't know how long we will need to be here, but we don't really have much of a choice. Simon. x

10/04/09:     STILL A BIT WORRIED: Henry seems much better than yesterday and we are getting our cheeky little boy back. However, his scar still looks angry and he is in obvious discomfort when he moves. The neurosurgeon phoned back and we discussed the situation and they would still like to get antibiotics into Henry. We did not want to use the one we have been given as it really made Henry poorly very quickly and we don't think he will keep it down. So we've been prescribed another which we will pick up soon. We will also try to get some kind of pain medicine into him if we can, to ease his movement. At least we have no therapy this weekend so it gives us a chance to concentrate on getting Henry better. We do have to say goodbye to Nanan and Grampy this weekend who have been a huge help through these last weeks and we can't t imagine  how we would have done it without them. We will however be welcoming suitable replacements when Granny and Grampy fly in on Easter Sunday. So with a lot going on there probably won't be any updates over the Easter weekend, so it remains to wish everyone a HAPPY EASTER!!!!!! Love from Polly, Simon, Henry & William. x

09/04/09:    GOOD DAYS & BAD DAYS: It's still raining which kind of reflects the mood here today. We noticed this morning that Henry's scar is a bit inflamed at the top and has a bit of a lump there. He looks like he's in a bit more pain than he has been, especially when we move him around. So we had therapy and Henry didn't get a lot of work done - even stuff he has been doing all week he had problems with today. Although he wouldn't admit he was hurting (in case we gave him medicine) we could see in his face he was in pain. Even Michael being his usual wacky self didn't get Henry moving much. We got Nicole up from Neurosurgery up to check out Henry's scar and she doesn't think it's much to worry about. She will give us a week's worth of antibiotics as a precaution, but thinks the incision has probably got knocked about (maybe by Henry & Williams wrestling match yesterday - he has also been sliding out of his wheelchair which scrapes his back). So today we will take things a bit easier and just do lots of stretching.

                    BAD TO WORSE: We got round to giving H his antibiotics in the afternoon. Around 20 minutes later he was really sick and brought everything back up. He began to look really poorly and just lay around saying his stomach hurt. After a little kip he woke up and was sick again. We rang the neurosurgeon on call and they told us to keep an eye on his temperature and try to get some more antibiotics into him. Well, we couldn't get anything into him not even apple juice he threw it back up. Eventually we settled him down for the night and he slept pretty well and had 2 drinks in the night which he kept down. Simon x

09/04/09:    WET PLAY: We're getting used to not being able to predict the weather. When we woke up it looked like it was going to be another beautiful day, but by the afternoon it was pouring. Typical because therapy was in the morning so we were inside for the best bit of the day. The day started with a bit of a disaster. We tried to shoot some Tylenol into Henry's mouth before therapy and managed to make him gag and spectacularly projectile vomit over himself, his wheelchair and his poor Grampy - sorry Grampy. Anyway we had a speedy clean up and made it to therapy only 10 minutes late. We had Michael again and once again he was great with Henry - I think he's the reason Americans invented the word 'Goofball.' He certainly is funny. So during therapy, Henry did really well considering he had no pain medicine inside him. We practiced sit to stand and did a lot of supported walking on the treadmill. By the end of the session Henry was saying he had enough, but luckily his other therapist Beth came in and had Henry racing her around the gym doing some good reciprocal crawling.

                        In the afternoon we went to get some supplies and the boys enjoyed driving around the supermarket in shopping trolleys with cars on the front. When we got back we started playing inside because of the bad weather and got Henry doing his exercises without thinking. At one point, he crawled to his walker, stood up, turned round, took 3 steps and kicked a ball - all unsupported! We then did some more crawling games and played with a ball on the stairs, getting some more kicking in. Well Henry certainly is getting back to his old self and even though we tell him to take it easy he still can't resist a 'pile on' and a bit of rough and tumble with his little brother. Simon. x

 

08/04/09:    BRING ME SUNSHINE: Well we still don't get this St Louis weather. After the snow at the start of the week, today was lovely and warm with sunshine and blue skies all day! Therapy was in the morning so it gave us a chance to get out and enjoy the sun in the afternoon. The morning session did go well though and Henry tried lots of new equipment with varying degrees of success. Michael was today's therapist and Henry is building quite a rapport with his therapists and likes Michael because he is always teasing him. We began on a treadmill and although the walking part may be a bit too advanced at the moment (he did do a few steps), Henry did do some good sit to stand transitions with little help. We then tried another bench raised at an angle of around 30o from the floor and Henry did a number of squats demonstrating some good control at some points. He finished with a few laps of the gym on the bike which he really enjoyed.

                    In the afternoon we came back to the hotel to pick up Will who had been looking after Nannan who was poorly and head out towards the St Louis Arch. Grampy stayed to look after Nannan, although we really think he just wanted to watch the football - although I'm sure he may have reconsidered if he had known how many Liverpool would lose by ;o) So we got to the Arch and thought quite a lot about going up, but Mummy decided we better not (especially when she saw how high it was, as she is scared of heights!!). We went for a walk and then a riverboat cruise along the mighty Mississippi to see the sights of St Louis from the water. To be honest, all we saw was a lot of industrial buildings with most looking derelict. We did enjoy being on a boat, although we think going up the Arch would have been better! Still we have another 3 weeks to get Mummy up there. Simon x

 

07/04/09:    HENRY & OTHER ANIMALS: Today was the first day we didn't have to be up early for appointments. After a leisurely breakfast we headed to a shopping mall to pick up a few things including a ball for extra therapy sessions while at our hotel. Although we did find a ball, Henry also found a St Louis Cardinals cap which he wanted his Daddy to buy for him. He hasn't taken it off much all day!! (We just need them to start winning because they managed to lose the game last night in the last innings!). So we went to therapy and Henry was cast for his new DAFOs (although he didn't like the idea and let most of the department know in his own very noisy way). Henry got to pick the colour of his DAFOs, the straps and the pattern for the velcro and so he chose red (surprise) and a rock band pattern. After the casts were made Henry did some assisted walking and lots of supported standing while playing a fishing game, (which Daddy won ;o).

                    So after therapy, we all met up with Shannon, Jack and Nichola and headed to the Zoo. Shannon was a real trooper and managed to squeeze us all into her minivan to get us there. It is a very big zoo with lots to see (and it's free!!). We didn't get to see everything in an afternoon but will definitely go back. It had lots of steep slopes and Henry enjoyed whizzing down the slopes - and I think Jack will sleep well tonight after pushing him back up! By the end of the afternoon Henry was feeling tired so we all headed back for dinner and off to bed. We have therapy earlier tomorrow so let's hope Henry will be well rested and ready to knock 'em dead. Simon x

                    

06/04/09:     H THE OUTPATIENT: Henry was very excited to wake up in the hotel with us all and really enjoyed going down to choose his own breakfast at the buffet. When we were fed and watered we headed to the hospital for therapy. Henry took to our therapist Michael who in Henry's words was always' teasing him.' If you know Henry you know the best way to get him to do something is to tease him and to pretend you don't want him to do it. Well, Michael sure played that card. He managed to get Henry back into his Kaye Frame, although the walking was very laboured and his weight bearing was minimal. We did get Henry kicking a football from a sitting position better than he ever has before. We finished the session as we started by playing throw and catch with Henry seated to improve his core stability and increase his muscle strength in his trunk. Overall another good session considering he had major surgery less than a week ago!!

                    After lunch at the hotel we decided to go for a walk to explore St Louis some more. We headed down to Union Station and around the shops looking for a good football (sorry soccer ball) for Henry's therapy outside of hospital but didn't find one. So we headed Downtown to check out St Louis and the Gateway Arch. We hung around Busch Stadium because it's the first game of the baseball season and the Pittsburgh Pirates are in town. there was a good atmosphere and when we left the St Louis Cardinals were winning 3-2, although I haven't checked the final result on TV yet, but I'm sure they would have come good. The shuttle bus picked us up from downtown and we had dinner in the hotel before heading back to the room. Henry wheeled himself on into the room while William ran about outside. By the time we got into the room, Henry had got himself out of the wheelchair and was playing on the floor!! We were astonished because we have been treating him so delicately and lifting him in and out of his wheelchair, we just didn't think he could do it alone. So I guess, today finished on yet another high note. Tomorrow's therapy is in the afternoon, so we might get our first lie-in in weeks - if the kids let us!!!

 

05/04/09:     HOTEL BOUND: Henry woke up very excited today because we were finally going to leave the hospital and head back to the hotel. The room has been very nice as hospitals go and the staff cannot do enough for us, but we are starting to feel very cooped up after 6 days. Anyway, after a light breakfast and a begrudging squirt of Tylenol, Henry had a 90 minute PT session to get through before we could go. Once again he looked stronger and had another good session. These sessions are now about awakening Henry's muscles that he wasn't using before and trying to get them to 'fire' so he can use them correctly. His therapist was pleased with how keen he was to do exercises which were quite difficult for this stage of his recovery. Henry finished the 90 minutes with yet another swing but this time sat on a sort of gym ball, which is difficult and needs good trunk control, but he did great.

                    Once therapy was over, all Henry could talk about was getting back to his home in St Louis - the hotel. First we had to say goodbye to Carrie and her family who have been great and we have swapped details and really hope to stay in touch. We gathered our stuff, said goodbye to the nursing staff and met Nanan, Grampy and Will before heading back to the hotel on the shuttle bus. Once we were back at the hotel, Henry was soon on the floor playing with William, Grampy and the train set we had borrowed from Jack (Mummy and Daddy took this opportunity to catch up on some much needed kip!). Henry was even doing some good transitions on the floor without realising - all good therapy. Anyway, when Mummy and Daddy woke up we still felt a bit cooped up and so we went for a walk down to Union Station for an hour before heading back to the hotel. Mummy, Nanan and the boys played downstairs in the little alcove they have made their own, while Daddy and Grampy talked through the finer points of the big national ladies college basketball tournament, which is down to the last four and being played a few minutes away at the St Louis Scott Trade Centre (so the hotel is very busy - Daddy thinks Louisville Cardinals will win). So with everyone chilled out we headed back to the room and we have just settled the kids in bed and Henry has the biggest smile on his face as he is so happy to be back with us all in his American bed! Simon. x  

 

04/04/09:     ANOTHER GOOD DAY: Firstly, can we say a huge HAPPY BIRTHDAY to Henry's cousin Ellie. We hope you have a fantastic day and we're sorry we're going to miss your party! Henry had another good night sleep and was ready to get up for therapy this morning. After a bit of breakfast we headed down to meet his PT Beth at 9am. The session went well and Henry grew in confidence as the hour went by. At the start he didn't want to do anything because he was worried his back would hurt. By the end, he had crawled through a pop-up train tent, walked 10 steps supported by Daddy & Beth, sat on a bench to do some drawing and reaching and then crawled to a swing for a ride, before crawling back to his wheelchair. He is still weak, but compared to yesterday and particularly the day before it's a massive improvement.

                       After therapy, Henry and Daddy went on another tour of the hospital and back to the garden again - he certainly does love it out there. We then came back to the room and Henry and William played with some lego (no sign of tiring after PT this morning). Dr Park then came to visit Henry and was happy with his progress. We were reassured once again with his confidence and he said that Henry would continue to improve rapidly. Henry likes Dr Park and has called his new teddy 'Dr Park' and even dressed him in his doctors uniform and given him a stethoscope (see picture below). Anyway, more therapy this afternoon - which is going to be more exercise, less play so let's see how that goes. Simon. x

                    After dosing Henry up again, we took him down for afternoon therapy. The drugs seem to kick in just when we began the stretches and Henry was beginning to doze, but all things considered he pulled through and we got him to finish his session. By the time he got back on the swing at the end he was quite awake. So we had another afternoon exploring the hospital and some time playing with the lego in the Ronald McDonald House. As the evening drew in, Henry showed no signs of flagging and our new friends from North Carolina (Doug, Pam and Carrie) asked us to join them for dinner so we had a nice meal and finished with Henry and Carrie playing Hangman. Both the kids were exhausted by the end and we all went back to chill out and prepare for the last PT session in the morning.

 

03/04/09:     UP AND ABOUT: Henry's been counting down the hours until he could get out of bed and this morning at 9am was that time. He slept through the night although he has been sick a few times and so far has not kept any medicine down. So without any pain relief he let the physio show us how to transfer him from the bed into his wheelchair. She then watched me transfer him back to the bed and then to the wheelchair to make sure I'm doing it correctly. Then that was it. Henry reached for his wheels and wanted to go off for a spin. He wanted to go outside in the garden on the 8th floor which William had told him about. Then he went to the playroom and played with the Thomas train set and a huge castle. After another spin round the garden, the little guy was a bit worn out and so we came back to the room and got him back to bed where he played with some lego before nodding off. We have more physio this afternoon, which may be a bit more intense so I think we may need to try and get some medicine into him to ease any pain - I can't believe how tough he's been so far! He's just had a lot of juice and a yoghurt and is sleeping it off, so hopefully his sickness is over too. Simon. x

                        Henry is my HERO!!! Today was the day Henry has been counting down to, when he can get out of bed. The physio came and showed us how to maneuver him, it was scary because he is so precious any movement can hurt him. He is so brave he had no pain medicine because he cannot keep it down but he soldered on anyway. He couldn't wait to go and see the rooftop garden and when we arrived the sun was shining and it was beautiful my boys looked like two little angels up there I am so proud of them both. Polly x

                        AFTERNOON REPORT: What an amazing afternoon we have had and what a difference. We managed to craftily squirt some Tylenol into him while he was having a drink to ease the pain for afternoon therapy. When his therapist Michael turned up, Henry was ready to go again and keen to get out of bed. This time mummy was brave enough to transfer H to his wheelchair and did a good job. In therapy we transferred Henry onto an exercise table and Michael explained how the ways we stretch Henry are going to change, using four basic stretches as an example. WOW. What a difference. We couldn't believe what he was doing with Henry's legs! He was moving his feet and legs in ways not possible before and Henry wasn't in any discomfort. In fact, he went right off to sleep!! The pain relief had just kicked in and he slept until we had gone through the stretches and were ready to move him back to his wheelchair. Then Henry wanted to go for a tour of the hospital. We ended up in the Cafeteria and Henry chose his own lunch - pizza & salad. When we got back to our room he ate 3/4 of the pizza and plenty of salad - and kept it all down. Certainly a change for the better and good that he has his appetite back.

                    As soon as he finished his dinner Henry wanted to go for another walk and go back to the garden. We also went to the shop and he chose some new lego. When we got back to the room, John, Shannon, Jack and Nichola had arrived and the kids (including William) played with Henry's new toys on his bed. After all that excitement Henry had another nap. When he woke up we had more visitors. We have made good friends with another family who have a sweet little girl called Carrie, who is 6 years old and had her SDR with Dr Park right after Henry. Her mommy & daddy have been looking out for us and bringing us breakfast when we were having a tough time. Anyway, Carrie came round to see Henry and he wanted to get back in his chair and go for a late evening cruise around the hospital with her. So we took them out for around half an hour until they both started to look tired. We're now back in the room and after demanding several stories (and another crafty squirt of pain meds) he has dropped off to sleep. But what a difference a day makes. Here's hoping he keeps improving at this rate. We have two more therapy sessions tomorrow so fingers crossed. Simon x

 

02/04/09:     OVER THE WORST (fingers crossed): We haven't been able to update the diaries for a day or two because we've had a rough 36 or so hours with the little man. Starting from the afternoon following surgery, Henry was very agitated and was trying to get up. We were told that he would be very weak after surgery, but there was certainly no sign of that! Henry is a strong as ever! Mummy and Daddy spent the next 24 hours trying to keep him lying flat and answering the same questions - 'can I get out of bed?' 'when can I go back to the hotel?'

                        Dr Park came to see us yesterday morning and after hearing the events of the night decided to stop one of the pain medicines Henry was on (Fentanyl) because it was making him agitated. It took a little while but as it wore off he has become a bit more relaxed and we had a good night last night - even mummy & daddy got some sleep ;o) So Henry is off the IV pain relief and onto oral medicine about 24 hours earlier than most kids and although he still wants to be up and is still asking to go back to the hotel, he is much better. We are happy now that he is so much more settled and is beginning to notice the difference with his legs - 'my legs feel soft' he told us earlier. So roll on tomorrow when we can get Henry up which he sooooo wants right now. Simon . x

                        Henry is such a Superstar! He has been through so much in the last couple of days. There has been times when if I knew what he would go through in these first few days, I don't know if I could have could have gone through with it all. I know that this is going to give him a chance that he would not have had before so it is the right thing but it was hard!!! I so wished I could have taken it all for him. Things are getting a lot better now and as I type, William is snuggled up with H on the bed watching Peppa Pig. Bring on tomorrow when Henry can get out of bed he is counting the minutes and so are we.  Polly x

 

31/03/09:     TODAY'S THE DAY: Hi everyone. It was an early start this morning. We were up at 4.55am (although we didn't really sleep much). We checked into the hospital and Henry was weighed, measured and had his vitals taken. He was pretty grouchy because of the early start and did get a little upset with all the prodding and poking, but eventually settled down. They gave him some medicine to relax him and this also gives Henry some amnesia - so he won't have any bad memories of the pre-op routine. Anyway, apart from a slight runny nose and cough, H is in good shape and they are happy to proceed, so they took him down around 7.30am. We got a call at 8.30am to say that he went under with no problems, he's doing great and the surgery has begun. Now we're in our private waiting room. Polly is finally getting some sleep in - I think I'll sleep next week ;o) Anyway, I'll try to put in more updates as we go, but the surgery still has another few hours to run yet.

                    10.10am - we've had a call from surgery that everything is fine and they are just closing him up. Dr Park will be with us soon to give us more information about how it all went.

                    11.00am - Dr Park has been and is very happy with the way the operation went. Henry is just fine and is in the recovery room. When he begins to come round they will take us to him. So this might be the last update for a while - he will be poorly and very sleepy for the next few days and we'll add any further developments when we can. But the main thing is that he is through the surgery - we now move on to stage 2 - recovery, which is just as important as the surgery.

 

30/03/09:     After spending a lovely day hanging out with John, Shannon, Jack and Nicola at 'The Magic House' (Science Museum) and their house yesterday, it was another early start today as we went to The St Louis Children's Hospital for Henry's pre-op assessments. We were first shown a video of what to expect in the coming weeks. Then we had a meeting with the Chief Physiotherapist Joan Pugsli, who was lovely and answered a lot of questions about what we would need after the op in terms of orthotics/kaye walkers, etc. We also saw James Lee who is coordinating the visit to run through a few of the more practical points concerning the next few days.

                    At about half nine we finally met Dr Park. He is really nice and put everyone at ease and H took to him well and showed him how he walks/stands, etc. Henry also let him examine and stretch him which he usually gets upset about if he doesn't know the person. Anyway, when Dr Park had finished his examination and talked to us and answered our questions he finally told us what I guess we have been waiting to hear. He predicted (with confidence), that Henry would benefit greatly from SDR. With plenty of therapy and walking post-op, he thinks Henry will not need a wheelchair in the future and will be able to walk using canes outside and in protected environments - to walk unaided!! Obviously this is a little way down the road, but we're SO glad we're on that road. He did say that although the spasticity will go, Henry will probably need muscle release surgery for his heelcords and hamstrings in 3 or 4 years, but this will only help him further and is much less intensive than the sort of multi-level surgery we were looking at if he didn't have SDR. Overall we are really chuffed with how positive Dr Park is and he has really reassured us all ahead of the next few days, which will be tough.

                So tomorrow is the big day. Henry is the first up with the surgery scheduled for 7:30am. We have to report to the hospital for 6am, so at least we get up early and get on with it rather than hanging around all day waiting. The surgery takes up to 3 hours and so hopefully Henry should be coming around at lunchtime. We then spend the next five days in hospital, although after the first couple of days, he should be much better and begin to be able to get out of bed a bit. So we'll try to update the website in the meantime, but as you can imagine we may not be able to do it as regularly. Thanks to everyone at home for their messages of support. After today we know we're in great hands and have made the right decision. Simon. x

 

28/03/09:     It was an early start for us this morning, to get to the conference to see Dr Park, we left the boys snuggled with their Grandparents.  We didn't really know what to expect, when we arrived we were greeted by coffee and cakes which was yum and just the ticket. Dr Park's presentation was the first and I am so glad we came. I am so nervous about next week but listening to him talk about the benefits and the safety of the surgery really reassured me. He explained how the surgery is done and to be honest it was all I could do to not cry out when he told me exactly what what was going to do to my baby but then he showed us what it could help Henry achieve and I know we are doing the right thing. We met some really nice people who have recently been through the surgery themselves with their young children, they were so excited that Henry was having S.D.R. They explained what lies ahead of us all next week (its going to be very scary but at least we have been warned). But most important they told us how it has totally changed their children's lives for the better. I know I have to be very brave and not be scared but be strong for my family and make this work for Henry he is such a special little boy he deserves the best. Polly x.   

 

27/03/09: MEET ME IN ST LOUIS: We arrived in St Louis on Friday evening, very tired after a mammoth journey and were pleased to be met at the Airport by John and Shannon who brought us to our accommodation, which is really nice. The boys were very well behaved on the journey and Henry in particular was very excited about being on the plane and had to narrate each journey for us. Today we are off to the 5th Annual Cerebral Palsy Conference which is being held here in St Louis. Henry Surgeon, Dr T.S. Park is giving a lecture on SDR, so we are looking forward to that. We'll let you know how it goes. Take Care, love to everyone back home. Simon. x