THE ST LOUIS DIARIES 2010
Hi Everyone, thanks for dropping by to check on Henry's progress as he returns to St Louis for a follow up appointment with Dr Park and eye surgery with Dr Tychsen.
Henry and Polly fly out to St Louis on 23rd May 2010 thanks to free flights donated by Continental Airlines. Simon & William will fly out on 28th May to join them and the first hospital appointment is with Dr Tychsen on 2nd June.
12 & 11/06/09: HENRY CHECKS OUT OF THERAPY: We've been busy again so it's another two day update. Thursday started as usual with therapy and we saw Michael and did some leg strengthening exercises. Henry started with the total gym which is similar to what he uses at home. Michael was impressed with the strength and control he showed when lowering himself down the equipment just using his legs, he said he thought Henry had the best control he seen in a 'Rhizo' kid for some time, so that's good. We also used Michael's favourite machine which involves Henry kicking each leg individually while strapped to a computer which shows how hard he can kick forward and back. When he got the hang of it Henry worked really hard and seemed to enjoy it. To finish therapy, Henry did another lap of the therapy centre and was getting quicker on his sticks because he was adopting a two-point gait at times.
After therapy we headed up to see Nicki and Ethan and were glad to hear they had had a much better night and although the little man still looked frail and a bit 'out of it,' he did look lots better. When we got back from therapy we found that everyone else had gone to the pool for the afternoon so we joined them and had a great time (although we were worried about Henry's eyes as he wanted to be in the pool all the time but wouldn't wear his goggles - but he was ok).
Once finished at the pool, all the girls went to watch Nicola rehearse for her recital on Saturday, which left the boys free to have a 'boys night' and Mike treated Henry William and Jack (and Daddy) at Incredible Pizza. This is similar to the Chuck E Cheese place we went to on Tuesday but bigger and the games are for older children. All the boys loved it again and all seemed to win more tickets than ever - which meant they all had some really good prizes to bring home.
Friday was an important day for a few reasons, not only was Henry checking out of therapy but the world cup finals were starting in South Africa!!! Cool!!! Therapy was early today and Michael had to take measurements from Henry in terms of his range of motion and spasticity. He was really pleased with the results and commented that there was no sign of any spasticity returning (although it is not supposed to anyway it is nice to hear). Beth and Michael had also come up with some homework for Henry in terms of exercises we can do back home which will help him continue to improve. Michael then took Henry for a spin on the trike and we ended up in the rooftop garden where we bumped into Nicki, Kev and Ethan who was out of bed for the first time and having a walk in his stroller to get some fresh air. So that was great to see and he really did look so much better than yesterday. After the bike ride we said goodbye to Michael and James Lee and headed back up to Ethan's room to see him again before we went as Daddy won't see them for a while (but hopefully Mummy will). Ethan looked tired but had more physio scheduled with Michael for the afternoon - we know he'll do great from now on and wish the whole family the very best.
So with Henry given the all clear from Therapy and hitting the goals that were set last year we headed back to the Downing's to meet up with everyone else. All the kids were tired and stayed home with the girls while the preparations were made for the big England v USA Party being held on Saturday. Daddy, Mike & Jon made the most of the free afternoon and headed off to shoot a round of golf which they all really enjoyed, especially as the gold buggies had a cooler and some tinnies ;o) When we got back, the kids had all been asleep so were supercharged and going crazy - especially as they were all excited about tomorrows party, it should be good. COME ON ENGLAND!!!
08 & 09/06/10: HENRY & ETHAN BOTH DOING WELL: Another busy couple of days to catch up with. Firstly, Ethan had his SDR with Dr Park on Tuesday and the procedure went well. We popped in to see Nicki & Kev after Henry's therapy session just as they received the phone call to tell them that the surgery was over and was successful. So that's great news!! Henry's therapy session in the morning had been with Beth and she gave us some good ideas for therapy and is going to write us a new programme. She also cast Henry for some new DAFOs which may even arrive before he leaves the USA. He had a go on a 'Pedalo' which he enjoyed and it was a good exercise for helping him shift his weight from one foot to another - we may have to get one at home as he really liked it.
After therapy and visiting the Smiths, we came back and met up with the rest of the gang and headed to Chuck E Cheese as it was raining. We hadn't been to a Chuck E Cheese before and we all had so much fun that we think they should have them in England. You buy pizza and drinks and get tokens to play on lots of different games (shooting basketballs/air hockey/arcade machines/etc) and you win tickets which can be exchanged for prizes. Henry's favourite game involved shooting a jet of water at a target and we were amazed by his vision - the bullseye was about the size of a 50p piece and about two metres away, but Henry kept the jet on target and beat William every time! We hope this is a sign of improvements in his vision but also know it's still early days. After Chuck E Cheese, we all came home and got a babysitter for the kids so we could go out for dinner and even though Daddy could hardly move after sharing 54 chicken wings with Jon, at least the kids had a whale of a time with the Chelsea the babysitter.
So today we were back in to SLCH for another therapy session for Henry. Michael took it today and it was good to see him again. Henry was certainly happy to see him and worked really hard to show him what he could do now. He started off on a treadmill and did some good forward walking, side stepping both ways and backwards walking. Michael then wanted to see him walk with his sticks and so he walked around the entire therapy unit (and quite fast at times too). We finished the session with some basketball where Henry was stood with Michael behind just stabilising him and throwing into a net just above his head. He did really well and at one point hit three in a row.
After therapy Mummy & Daddy went up to intensive care to see how Ethan was doing. It was good to see Nicki, Kev and Ethan and they told us that Ethan had a bit of a rough night and it sounded similar to our experience with Henry. It did look like they were over the worst and while we were there Ethan woke up and was chatting to us telling us about his new toy puppet he had so that was great to see. They were due to be moved up to floor 12 later this afternoon and hopefully Ethan will continue to improve. We will pop up to see them tomorrow after therapy. So we left the hospital and Mummy went shopping with the girls while Daddy was left to cook dinner for everyone tonight - let's hope they don't mind takeaway pizza - unless Mummy's spent all Daddy's money in the shops ;o)
06 & 07/06/09: SUNDAY AT THE ZOO AND MONDAY AT SLCH: Sunday was a bit of a busy day as we took the Smith family to see the St Louis Zoo with all the Downing family and we also moved back to the Downing's residence in the evening - and they had friends round for dinner so it left no time for an update. It was a fun day though and although we have been to the zoo a few times before, it is still lots of fun and all the kids seemed to enjoy it.
They had a new attraction where you could feed and stroke some stingrays in a large pool. Jack and Nicola were straight in stroking the rays, William needed a little bit of encouragement (especially with the big ones) and Henry needed lots of encouragement to touch one, but he did in the end. Jack also got some food and fed some rays, even though his Dad squealed like a girl when he had a go feeding them - nice one Jon ;o)
So after the zoo, Shannon took the Smiths to a supermarket and back to a hotel while we headed back to the Downing's get settled again. That evening Jon and Shannon had some friends, Nancy and Rich, over and Shannon cooked another fantastic dinner and we had a fun evening playing games. The boys hit the sack earlier than usual so Henry was ready for his big day back at St Louis Children's Hospital.
It was actually pretty nice going back to Children's this morning and seeing everyone again. Our first appointment was with Dr Park and James Lee came to meet us which was nice and after chatting with him, we went through to see Dr Park and Nicole. Henry showed them some great walking with his sticks and Dr Park wanted to know why he wasn't doing it more often because it was so good. He then watched him walk with his sticks and walker, with and without shoes, then he had a feel of his legs to check his range of motion. Overall, he was really pleased with Henry's progress and still thinks he has the chance of walking unaided in protected environments. He did say Henry had to lose a few pounds though and we can see why (but we'll probably wait until we get home before starting any diets!). So he told us he wants to see Henry using his sticks more although his walker isn't bad if he's running around in it. He then had a chat for Daddy about bringing his SDR to the UK and how the problems we are facing are similar to those he faced when introducing the procedure in the USA 20 years ago. We all agreed that we are getting close and the team at Frenchay have a good chance of pulling it off, which is good news, the massive problem as always is getting the funding.
So we left Dr Park and headed for our physio evaluation with Deanna. We went into the evaluation room and went through the same exercises and assessment tasks that Henry performed before his surgery a year ago (in fact Ethan had just been in the room doing his pre-op assessment). The whole thing was filmed so they could compare to last year's footage. Once again, Henry did great and did everything he was asked - even with William running around the room like a mini tornado! Deanna echoed Dr Park's comments that he walks well on his sticks with straighter hips and so should use them more often. She also told us to take the back brakes off on his walker so that he doesn't lean backwards on it and it will also encourage him to walk backwards when he needs to rather than pick up his walker and turn it. It was a good session and Joan Puglisi and Beth also popped in to see us for a chat. Beth said she will cast Henry's feet tomorrow for some new DAFOs which they may be able to get before Mummy & Henry leave the USA. Overall it was another good appointment and Deanna was particularly impressed with Henry's range of movement, particularly in his ankles and hamstrings - she was surprised that he hadn't had any other orthopaedic surgery after the SDR to achieve this.
After the appointments we headed to the cafeteria because we had promised Henry he could have one of the pizzas he loves and a diary queen ice cream. We had also arranged to meet the Smiths who had been at the hospital all morning for their pre-op appointments with Dr Park and his team. They seemed to be a little less apprehensive today and I think that seeing how good the hospital was and meeting Dr Park had given them a lot of reassurance that they were doing the right thing. Saying that, we know how they are feeling and send big hugs out to them all tonight. Ethan's surgery is first thing tomorrow, so by the time we finish with Henry's therapy at 10am we may be able to pop to see them to check how it went. I'm sure it will all work out well for them and Dr Park told them (and us) that Ethan should be able to walk independently in a year or two, so good luck and fingers crossed!!!
05/06/10: GO RED BIRDS: Today we took the boys to their first Cardinals Ballgame. They had a really good time, well until about the 7th innings when they'd really had enough so we brought them back to the hotel - it was a good job because the game went into 11 innings before Rasmus brought the Red Birds home with a 5-4 win!!! Daddy and William were happy that they saw Albert Pujols smash one out of the ground, especially as it was only the 2nd home run he has scored at Busch Stadium this season. Henry was just happy to have watched Yadier Molina play. Mummy was happy with most things until William spilled his whole cup of fries on the floor (well they were 6 bucks!!).
The day started with a nice breakfast and we met up with Nic, Kev, Anna, Ethan and Freya and headed to the Arch on the shuttle bus. We looked around and went underneath to show them the museum. When the kids were fed up with that we headed to the bars on Chestnut Street and ended up in TGIs again for ice cream (and some sneaky beers). The Smiths then headed back up towards Union Station and we all headed to the ballpark. We knew it was a sell out game but the kids wanted to go so much we thought that if we got standing room only (SRO)tickets at least they would get a taste for the atmosphere on game day. Well what a bargain we ended up with...
We asked a nice lady at the ticket booth if we could get some SRO tickets and how much they were. She told us that they were $24 dollars a piece and after we told her that Henry was 6 and William was 4, they would both need tickets. Then she told us that she was sure that William was only 3 because he sure looked it. We agreed that we must have made a mistake and picked up our 3 tickets and headed for the gates (with Will still protesting that he was 4, but agreeing that if people asked he was 3 for a few hours). When we got inside, we asked where we should stand and a nice man downstairs told us to go to the 2nd level and ask for the handicapped seating at the SRO section. Once we were there we asked another man who pulled some favours and got us all seats in the regular handicapped area. So we ended up with great seats and met some lovely people, including a man who was on his stag party and bought the kids some cotton candy (Mummy and Will liked it anyway - Mummy says it's better than candy floss back home). So we had a fantastic day at the game and a big shout out to Jeff who looked after us and got us our seats!!!!! After all that excitement we headed back to the hotel to chill out with the Smiths and a takeaway - and a few sneaky beers no doubt ;o)
04/06/09: H ON THE MEND AND WELCOME TO ST LOUIS ETHAN: Henry had a free Friday to recover from his surgery. From the moment he got up he was lots better. He was really chuffed he could go down for breakfast and made the most of it having his first blueberry waffle of the visit and lots of maple syrup do dunk it in. Mummy and Daddy made sure he didn't eat too much though as he was poorly the night before. After breakfast, we walked Downtown to look round Macy's and get the boys presents for being so good and luckily the had some Disney Cars toys which they haven't already got so they were both very happy - and it was very deserved. Apart from Henry's red eyes (and the fact that he was tired so we used his wheelchair) you wouldn't know he had eye surgery the day before - and a big shout out to Henry's little brother who has been brilliant through the whole thing!
While we were Downtown, the boys also had an ice cream at TGIs and we went to the ballpark to see if we could get Cardinals tickets for Saturday's game. It is a sell-out and they only had standing room only, but the boys were pretty upset when we told them so we'll probably still go. In the late afternoon we got our shuttle bus driver Arnold to take us to a steakhouse he knows called Tuckers. We went there last year and it was lovely and this year was no different!
When Arnold brought us back we arrived just in time to meet Ethan and his family who were getting out of the taxi we had arranged to pick them up from the airport. It was lovely to see them and Henry, William, Ethan and Freya were very excited to see each other and our boys couldn't wait to show them around. After they had checked in we took all the kids to our room so Nic, Kev and Anna could get settled in the room. They joined us later for a few drinks and a catch up, before heading off to bed - well their body clocks were still set for 3am ;o) We are meeting them for breakfast in the morning and hope to show them around a bit before we head off to the ballpark (Arnold was scoping out some tickets for us).
One last picture: Henry makes a wish that he was 'Big', (which seems to worry Will a little) ;o)
03/06/10: OL' RED EYES IS BACK: Today, Henry had eye muscle surgery with Dr Tychsen at SLCH. He was very brave all things considered and is now back at the hotel sleeping soundly, although his eyes are very red (for obvious reasons) and may stay like it for a few weeks.
To start the day we did a series of tests at the eye centre to try to locate Henry's 'null' point - how he positions his head to minimize his nystagmus and make it easier for him to see. Yesterday he had tried so hard in all his tests, he was almost 'over-riding' his null point to show how well he could do. Today, he was a little more tired and soon resorted to tilting his head around 40o to the right in order to concentrate on a TV across the room. This was in keeping with what Dr Tychsen discovered last year and once Henry had consistently showed this 4 or 5 times, Dr Tychsen was sure that the surgery would benefit Henry by shifting his null point to the centre of his vision.
So, we reported to same day surgery and Henry was still in high spirits - until we were sent to the ward, then there was a cacophony of noise as he screamed and shouted that he wanted to get out. We finally calmed him down and promised that it was just day surgery this time and he would be going back to hotel with us all afterwards. He had some medicine to help him relax and was lots better. They came and got Henry and took him for surgery around 13:30 and he was back in recovery by 14:45. Dr Tychsen came and explained that Henry's vision may be blurred temporarily but should be ok by tomorrow although his eyes would look red for a few weeks. He said that there isn't anything Henry should not be able to do and to carry on as normal and make an appointment to see him next week. During the surgery he told us that he had tightened the muscles on the inside of Henry's right eye and the outside of his left eye to shift his null point to the centre but it may be a few months before he fully adjusts to these changes.
After enjoying a cherry popsicle in the ward, Henry was allowed to go back to the hotel, which he was pleased about. Back at the hotel, his healthy appetite kicked in and he polished off a bowl of ice-cream, lots of skittles - then headed down for dinner where he had meatballs, cheese, pitta breads, cookies and although it's great he's eating again - it did make him sick later! But he wasn't phased by it and we're sure it was just the anesthetic and volume of food which caused it so hopefully he'll feel much better when he wakes up tomorrow!
02/06/09: BACK TO SLCH FOR HENRY'S MINCE PIES: Our first full day back at the Marriott Residence and we're soon back into the swing of things. Henry was really looking forward to breakfast and sneaked up and stood behind Angie until she saw him - and what a surprise she had when she did see him. She gave him and Will a massive cuddle (and Daddy and Mummy too), then sneaked off to buy them sweets because she couldn't resist it ;o) It was lovely and great to see her and more of the Marriott team who we hadn't seen yet, from Stephanie on the desk to Carlton and Arnold driving the shuttles. Carlton dropped us at Union Station in the morning for a wander round and then after a quick lunch back at the hotel, we headed back to the Children's hospital for the first time in over a year.
It was a bit strange to be back but the boys were really excited. Henry wanted to look at the ping pong ball machine and the garden, Will wanted to go to the Sibling's Playroom while we had our eye appointment with Dr Tychsen. So we dropped Will off at the playroom and he had a fantastic time once again while Henry went through some initial eye tests (which he was brilliant at) followed by having some drops put in his eyes (which made him scream the place down). He was soon back on track and the waiting took so long, Will had to join us for the later tests with Dr Tychsen. It was a long day and by the time Dr Tychsen had finished, he told us he needed Henry to do some more tests in the morning so he could be absolutely certain of what he was doing in the operating theatre. Of course, we completely understand and know we are in such good hands that we will be at the hospital for 10:30 in the morning for tests, followed by pre-op at 11:15 and the eye muscle surgery is scheduled for around 13:00. The great thing is that Henry keeps going through the schedule with us and is totally fine with it and it doesn't phase him at all.
After the hospital we came back to the hotel and Mummy and Will went swimming while Daddy and Henry chilled. We went down for hamburgers and some more sneaky beers & wines for Mummy & Daddy and chatted for a long time to some other families from the UK who are over because they have had surgery with Dr Park. We popped out to the basketball court and let the kids play for a bit, before heading back inside so that Daddy, Henry & Will could cuddle up and watch the Cardinals beat the Reds to go back to the top of the Division, before heading to bed to rest for another big day at SLCH.
01/06/10: FORDS ARE INN RESIDENCE: After arriving in America with his Mummy on 23rd May and Daddy and William flying out on 28th May, Henry is now at the Marriott Residence ahead of his first appointment with Dr Tychsen tomorrow. What a fantastic time we've all had so far with our good friends Jon, Shannon, Jack & Nicola and Jon's parents Mike & Mary, who are also over from Midsomer Norton for a few weeks. As well as the time spent at the pool in the sunshine, we've also had fun at Grant's Farm where all the kids got up close and personal with some very clever elephants. It's a shame we have to leave them for a few days to come back to the hotel but at least it's somewhere familiar. The boys were excited when they arrived and ran around checking the place out to see if anything had changed. We went for something to eat at happy hour and Mummy & Daddy got reacquainted with the free beer & wine ;o) It was nice seeing the so many of the staff from last year and they still remember us, which is nice! Henry is looking forward to breakfast tomorrow and is hoping Angie is still working here! We all need a good breakfast to set us up for our first visit back to St Louis Children's hospital. At least Henry is very excited about it because that really helps.