After a couple of weeks of relatively leisurely starts, our last day in STL began in a slight panic. Having started packing the previous night I realised that I might have to jettison most of my clothes to get everything in the two suitcases. So, I did the (now, I guess almost customary) dash to get an extra bag - and along with it, one final shuttle bus run with Carlton. In the end, we were packed and ready in plenty of time so sat in the lobby and said final goodbyes to a few passing friends.
Getting onto the Manchester bound flight was rather interesting, given a couple of delays but we made it by the skin of our teeth. The flight was fine, and Ev even managed a small nap from 2130 - 0030 (STL time). He woke up with 26 minutes of the flight to go, and when he saw this info on the in-flight screens he was so giddy. Just kept smiling his big (slightly gappy) smile, wanting hugs and giving high-5s. We had to wait to until everyone had got off, so he was a bit impatient, but we were whisked through passport control and, as our bags were last on in Chicago, they were first off so we were done really quickly. [PS - Massive thanks to my other Big Journey Buddies - Wayne & Char, we certainly couldn't have got home without them]
The last minute of Evan's Big Journey.
As we got to the the departure area, I got Ev out of his wheelchair and we walked hand-in-hand to meet our family. Oh, yes - I didnt mention that, did I ....?
Evan's PT homework had included walking holding both "pinkies" and last Sunday we tried a bit of single handed balancing. And then a couple of steps. Over the week he got a little better, and is starting to get more balanced and can now do about 20/30 steps (before he starts laughing and loses his balance).
It is still a LONG, LONG, LONG way to go - but we are so proud. Im sure you will understand that this was some news that we had to save for Loup to see in person. She is Ev's Mum and made a massive sacrifice over the last couple of weeks. However, when he took those few steps towards her, I think it was worth it.
Friday 25 February 2011
Thursday 24 February 2011
Last Full Day - Day 33 - Wednesday 23rd February
After a late night at the hockey, we were both a little tired - so an early start for a 10am PT wasnt the perfect choice but it was ok. we managed to have a quick skype to the kids (at Grandma's) - i'll own up to it being my birthday today. Which is a little difficult in some respects (i'm not with my family), strange in others (i'm in STL with Ev), and great in parts (my friends Wayne & Char - are great company and came all this way!).
So, after a quick breakfast we took the shuttle to children's for our last PT. I'm not really very good at saying goodbye so wasnt really looking forward to it. However, it was a little easier that Mike and Erica werent around. We had said our goodbyes to them on Monday and Tuesday, respectively, and it was our first and only session with Blair. So we left the building - and it's obvious (now?) that it is the people, not the buildings which make a community. We have had a small community here, and so with a goodbye to John on the front desk (the SDR families will know who he is) we were done. A little sad, and if truth be told, a little scared - but knowing that we are in better shape than we arrived. A little homesickness and missing family and friends will quicky wash away, but the impact of Evan's Big Journey will last forever.
Another quick skype to home (apols to Loup - the arrival of our guests and the chance to do things has meant less skype time....) and we then headed to the Arch. Evan hadnt been before, as was the case for Wayne & Char so we took a ride to the top and ticked off another "done that" item. Essential for any visitor to STL.
Right, what to do now ..... ? Strangely, and almost as if we had planned it, it was 1945 at home (Man Utd game kick off time) and we needed somewhere warm to hide and have something to eat. So we popped back to Tigin.
We are now back to the hotel, and it's 6pm here. We are going to meet up with the Foxes and say hi, bye and good-luck. The girls have their second op in the morning so we wont see them as they have a dawn start, but im sure we will see them (and quite possibly hear them coming first....;) in the future. No, we will make sure of it. Ev's birthday party in April could well be a mini northern SDR reunion party !
I suspect tonight will be a relatively early one as Ev is flagging a bit, but you never know.... I might get one final birthday pint (although i'm going to get a re-run on Saturday!)
So, this is the last blog that im going to write on America soil. It started off as an alternative to writing postcards and we are amazed, in fact overwhelmed by how many people read it. (more than 10,000 blog reads in the last month !!!). As each person comments on it, or shares it, it makes us smile and realise that people are on this journey with us. I will carry on, in the future with further updates on Evan's progress, although don't worry - not daily ! and I guess there is only one word to sum up the last 5 weeks.....
Thanks!
The Whitton Family!
So, after a quick breakfast we took the shuttle to children's for our last PT. I'm not really very good at saying goodbye so wasnt really looking forward to it. However, it was a little easier that Mike and Erica werent around. We had said our goodbyes to them on Monday and Tuesday, respectively, and it was our first and only session with Blair. So we left the building - and it's obvious (now?) that it is the people, not the buildings which make a community. We have had a small community here, and so with a goodbye to John on the front desk (the SDR families will know who he is) we were done. A little sad, and if truth be told, a little scared - but knowing that we are in better shape than we arrived. A little homesickness and missing family and friends will quicky wash away, but the impact of Evan's Big Journey will last forever.
Another quick skype to home (apols to Loup - the arrival of our guests and the chance to do things has meant less skype time....) and we then headed to the Arch. Evan hadnt been before, as was the case for Wayne & Char so we took a ride to the top and ticked off another "done that" item. Essential for any visitor to STL.
Right, what to do now ..... ? Strangely, and almost as if we had planned it, it was 1945 at home (Man Utd game kick off time) and we needed somewhere warm to hide and have something to eat. So we popped back to Tigin.
We are now back to the hotel, and it's 6pm here. We are going to meet up with the Foxes and say hi, bye and good-luck. The girls have their second op in the morning so we wont see them as they have a dawn start, but im sure we will see them (and quite possibly hear them coming first....;) in the future. No, we will make sure of it. Ev's birthday party in April could well be a mini northern SDR reunion party !
I suspect tonight will be a relatively early one as Ev is flagging a bit, but you never know.... I might get one final birthday pint (although i'm going to get a re-run on Saturday!)
So, this is the last blog that im going to write on America soil. It started off as an alternative to writing postcards and we are amazed, in fact overwhelmed by how many people read it. (more than 10,000 blog reads in the last month !!!). As each person comments on it, or shares it, it makes us smile and realise that people are on this journey with us. I will carry on, in the future with further updates on Evan's progress, although don't worry - not daily ! and I guess there is only one word to sum up the last 5 weeks.....
FANTASMAGORICAL !!!
Thanks!
The Whitton Family!
Wednesday 23 February 2011
Running out of days - Day 32 - Tuesday 22nd February
I suppose it is always the case when you are away from home - you cant wait to get back, but you keep finding new things to do, as you find out more about your new, temporary, home.
Today, was another in a series of "last...." days. We had our last PT with Erica who, along with Mike, have been the two PTs we have mainly dealt with (plus "hi!" to Gosia, Nicole, Mackenzie and Sarah). Every time I think of our time with Erica I see three things; firstly - the day after his second op - excruciating, but Erica said it was always like this (worse, sometimes...) and it was worth it in the long run - so, so true !, secondly - her "chucking" him on the treadmill on his first PT after discharge when we had been treating him like a china-doll and finally the constant reverberations of "good job buddy!" and the smile that met any new "trick" he has developed. Today and yesterday, we walked out of the PT suite on floor 4, knowing that we perhaps wouldnt see these guys again in a professional capacity - but they have truly helped changed Evan's life. No less than that !
So, we had a slightly flat lunch, but were cheered up by a skype home. However, I so need to give out real, rather than virtual hugs to Loup, Maya and Sam. I'm fed up of kissing goodbye to the webcam.
We spent the rest of the day with Wayne and Charlotte - firstly watching a bit of EPL (English Premier League, obviously) and then moved onto the Scottrade stadium to watch the St Louis Blues. Bit bigger than the Billikens, yet equally bonkers.
Unfortunately, they lost - but it didnt really matter too much (aside from the score, 3-4, we didnt really understand much of what was going on - they may or may not have been the better team....).
Tomorrow is our last full day, last session of PT (with newbie to us, Blair), and then hopefully visit the Arch, and a nice night finish up. Oh, yes, and I guess i'd better start packing....
Today, was another in a series of "last...." days. We had our last PT with Erica who, along with Mike, have been the two PTs we have mainly dealt with (plus "hi!" to Gosia, Nicole, Mackenzie and Sarah). Every time I think of our time with Erica I see three things; firstly - the day after his second op - excruciating, but Erica said it was always like this (worse, sometimes...) and it was worth it in the long run - so, so true !, secondly - her "chucking" him on the treadmill on his first PT after discharge when we had been treating him like a china-doll and finally the constant reverberations of "good job buddy!" and the smile that met any new "trick" he has developed. Today and yesterday, we walked out of the PT suite on floor 4, knowing that we perhaps wouldnt see these guys again in a professional capacity - but they have truly helped changed Evan's life. No less than that !
So, we had a slightly flat lunch, but were cheered up by a skype home. However, I so need to give out real, rather than virtual hugs to Loup, Maya and Sam. I'm fed up of kissing goodbye to the webcam.
We spent the rest of the day with Wayne and Charlotte - firstly watching a bit of EPL (English Premier League, obviously) and then moved onto the Scottrade stadium to watch the St Louis Blues. Bit bigger than the Billikens, yet equally bonkers.
Unfortunately, they lost - but it didnt really matter too much (aside from the score, 3-4, we didnt really understand much of what was going on - they may or may not have been the better team....).
Tomorrow is our last full day, last session of PT (with newbie to us, Blair), and then hopefully visit the Arch, and a nice night finish up. Oh, yes, and I guess i'd better start packing....
Tuesday 22 February 2011
Starting the goodbyes - Day 31 - Mon 21st Feb
We need to go home. We both do.
However, as clear as this is, it's actually sad to start the leaving process. I guess you become a little "institutionalised" with the routine, the surroundings and the safety of being here.
First up, we had our last PT session with "Mad Mike" - who is as brilliant as he is bonkers, and who squeezed every last drop out of today's PT. He was really pleased with Evan's progress, although he is still a little sore on his left side - particularly the hamstring. Once he is over this, he will start to feel more comfortable, take longer and steadier steps, stand firmer, and really be able to make the progress he is due.
The highlight of the session was an AWESOME Wipeout zone which Mike built and, yet again, Ev beat me...
So, we said goodbye to Mike (hopefully until the next SDR party) but walked a little slower out of floor 4.
Quick skype to back home from the canteen and then onto our second appointment of the day with Dr Park. Post-op review. It only lasted 15 minutes but he was so pleased with him. Definitely stands by his original goal that Ev will be walking unaided within the year. He has a tough year of exercises, stretches, and developments in front of him, and we, whether it be as parents, family or friends, need to be there to support him. However, I just know that whatever we invest in Ev will be returned with interest. Dr Park is a man of few words, but it is clear that we have a great responsibility going forward - but how can we not take that on when we have come so far. Dr Park has "simply" given Ev the tools, and he can now go on from here, using those tools.
Once we had done the hospital stuff we met up with Wayne and Charlotte for lunch at The Cheesecake Factory (nice surroundings, good food, reasonable prices) before we headed back to the hotel where they played together for a couple of hours. We have been really lucky in that we have had Ben, Jacob, Amelia, Annabelle, Jack, Holly and Lucy to spend time with while we were here but the obvious bond between Ev and Charlotte is clear to see. They just get on so well, and I cant say how privileged we are that they came to visit us, and accompany us home.
So, just a couple of days left. Tomorrow we have our last PT with Erica (from America) and a couple of other things planned. As I said, Im not great at leaving places, and saying goodbye, but we need to go home. We both do.
However, as clear as this is, it's actually sad to start the leaving process. I guess you become a little "institutionalised" with the routine, the surroundings and the safety of being here.
First up, we had our last PT session with "Mad Mike" - who is as brilliant as he is bonkers, and who squeezed every last drop out of today's PT. He was really pleased with Evan's progress, although he is still a little sore on his left side - particularly the hamstring. Once he is over this, he will start to feel more comfortable, take longer and steadier steps, stand firmer, and really be able to make the progress he is due.
The highlight of the session was an AWESOME Wipeout zone which Mike built and, yet again, Ev beat me...
So, we said goodbye to Mike (hopefully until the next SDR party) but walked a little slower out of floor 4.
Quick skype to back home from the canteen and then onto our second appointment of the day with Dr Park. Post-op review. It only lasted 15 minutes but he was so pleased with him. Definitely stands by his original goal that Ev will be walking unaided within the year. He has a tough year of exercises, stretches, and developments in front of him, and we, whether it be as parents, family or friends, need to be there to support him. However, I just know that whatever we invest in Ev will be returned with interest. Dr Park is a man of few words, but it is clear that we have a great responsibility going forward - but how can we not take that on when we have come so far. Dr Park has "simply" given Ev the tools, and he can now go on from here, using those tools.
Once we had done the hospital stuff we met up with Wayne and Charlotte for lunch at The Cheesecake Factory (nice surroundings, good food, reasonable prices) before we headed back to the hotel where they played together for a couple of hours. We have been really lucky in that we have had Ben, Jacob, Amelia, Annabelle, Jack, Holly and Lucy to spend time with while we were here but the obvious bond between Ev and Charlotte is clear to see. They just get on so well, and I cant say how privileged we are that they came to visit us, and accompany us home.
So, just a couple of days left. Tomorrow we have our last PT with Erica (from America) and a couple of other things planned. As I said, Im not great at leaving places, and saying goodbye, but we need to go home. We both do.
Monday 21 February 2011
Evan Whitton's Day Off (The Sequel) - Day 30 - Sun Feb 20th
Day 30.
4 sleeps.
Despite a busy time yesterday, the arrival of another sunny day and our last "free day" in St Louis, especially with our friends from the UK, meant that we simply had to take advantage. However, Ev had some PT homework to do first. He walked to breakfast in his walker, and then afterwards we went up to R301 to wish goodbye to Jack, Melissa and Anthony. Ev walked all the way. We met a scene which we will create ourselves in a couple of days time - a family closing down and heading for home. To be reunited with the ones we left at home. We wished them well, and i'm sure we will meet up at the next SDR party. Another set of friends which we have made. We wish them well on their own big journey - both over the next day or so, but in the future as well.
After finishing off some good PT - the rest yesterday had certainly helped and he did some good balancing and sit-to-stands (with pinkies). We then took things at a more leisurely pace and the four of us (Myself, Evan, Wayne and Charlotte) got a cab to "The Loop". This was the name of an old tram stop in this area and it has been converted into a 6 block stretch of shops, restaurants, and (gulp) bars. We sat outside a bar to start with and had a drink - I was a little concerned that we needed sunblock - genuinely !. We then had a wander round, it was pretty much the same feel as Covent Garden, although a little bit more "studenty", bit more bohemian and a bit more chilled (and no guys doing the silver painted statue thing).
We took a late lunch at Blueberry Hill, which gets penned as a St Louis "theme restaurant" but it's a little bit more "real" than that. Food was great, but I must admit that i'll be happy to get home and have a detox for a few weeks....PLUS - I will still never get over the fact that my favourite new drink (Schlafly Heifenweiz - a pale ale) occasionally comes served with a slice of lemon, but it's definitely a "beer". (kind of like Copper Dragon Golden Pippin).
Then we headed across the road to FroYo - which is a frozen yoghurt shop. This was a recommendation of Steph on the front desk and she was spot-on. As with Pappy's yesterday, there was a long queue - no greater recommendation than that. You can choose from any flavour you wish, and then it gets weighed at the end. Was lovely, just what we needed in the sunny evening. (honestly, if you had been here two-and-a-half weeks ago people were scared stiff of the ice-rain and today were out in shorts and t-shirts)
Quick jump into a taxi and head home for quick skype with Mums (although blighted with technical difficulties....) and where Ev and Char played for a little while. They always play really nicely together and it was good to see Ev have someone else to play with. However, they were both tired (and perhaps there were a couple of tired Dads as well...). So, an early night it was.
Big week coming up.....
Sunday 20 February 2011
Evan Whitton's Day Off - Day 29 - Sat Feb 19th
"I've said it before, and I'll say it again. Life moves pretty fast and if you don't stop and look round once in a while, you could miss it...."
So, we met up with Wayne & Charlotte to plan the day ahead. We got Ev's stretches and PT homework out of the way early on, although he definitely seems very tired. He has had a full on week of PT - probably the first, and only one he will have, when he has been firing on all cylinders. So he definitely deserved a day off. We joined up with Steve, Sarah, Holly & Lucy (Man U fans - so we outnumbered the one who wasnt...) and we made our first stop at Tigins - as we had discovered it was showing the Man Utd v Crawley game - my first game of soccer for more than a month. Well, I need to start reacclimatising I guess....
After that, we walked a couple of blocks down, and through the park to the Arch. However, while it is very quiet during the week, there was a mass of people there today. Cant blame them, I'm still simply in awe of it. As you walk around and view it from different angles, you get new and more complex views, with different lines and the reflection from the steel is bedazzling. Unfortunately, there was about a 3 hour wait for a trip to the top so we will have to revisit later on. However, I am definitely taking Ev to the top. The highest part of the big journey.
We had passed "Laclede's Landing" on the way down and, having read about it, we decided to take a look through. It was basically an old, St Louis cobbled street, lined with bars and restaurants, and then it was off to Pappy's Smokehouse- which was Wayne's special request for somewhere to eat. Apparently, being on "Man vs. Food" is a wonderful recommendation (http://www.manvsfoodfans.com/missouri/pappys-smokehouse/ - about 7mins in). It's difficult to explain, but it's basically best to sum up in one word; MEAT. Quite a basic spot, but the queue to get served was approx 45 mins. Which I guess says something about it. We actually managed to swing getting a table straight away, and it was great food, as well as a great experience.
We hopefully burned off a few calories by walking down to our final venue, The Chaifetz stadium to watch the basketball. Having been previously, with Maya, the Smithsons and the Wardleworths, I definitely wanted to go again. We weren't let down,as the atmosphere was equally as bonkers as my previous visit and everyone loved it. I simply cant explain what it's like. So im not even going to try. Instead, I will let you watch Ev's response at the end of the game.
So, we met up with Wayne & Charlotte to plan the day ahead. We got Ev's stretches and PT homework out of the way early on, although he definitely seems very tired. He has had a full on week of PT - probably the first, and only one he will have, when he has been firing on all cylinders. So he definitely deserved a day off. We joined up with Steve, Sarah, Holly & Lucy (Man U fans - so we outnumbered the one who wasnt...) and we made our first stop at Tigins - as we had discovered it was showing the Man Utd v Crawley game - my first game of soccer for more than a month. Well, I need to start reacclimatising I guess....
After that, we walked a couple of blocks down, and through the park to the Arch. However, while it is very quiet during the week, there was a mass of people there today. Cant blame them, I'm still simply in awe of it. As you walk around and view it from different angles, you get new and more complex views, with different lines and the reflection from the steel is bedazzling. Unfortunately, there was about a 3 hour wait for a trip to the top so we will have to revisit later on. However, I am definitely taking Ev to the top. The highest part of the big journey.
We had passed "Laclede's Landing" on the way down and, having read about it, we decided to take a look through. It was basically an old, St Louis cobbled street, lined with bars and restaurants, and then it was off to Pappy's Smokehouse- which was Wayne's special request for somewhere to eat. Apparently, being on "Man vs. Food" is a wonderful recommendation (http://www.manvsfoodfans.com/missouri/pappys-smokehouse/ - about 7mins in). It's difficult to explain, but it's basically best to sum up in one word; MEAT. Quite a basic spot, but the queue to get served was approx 45 mins. Which I guess says something about it. We actually managed to swing getting a table straight away, and it was great food, as well as a great experience.
We hopefully burned off a few calories by walking down to our final venue, The Chaifetz stadium to watch the basketball. Having been previously, with Maya, the Smithsons and the Wardleworths, I definitely wanted to go again. We weren't let down,as the atmosphere was equally as bonkers as my previous visit and everyone loved it. I simply cant explain what it's like. So im not even going to try. Instead, I will let you watch Ev's response at the end of the game.
Friday 18 February 2011
Got that Friday feeling ! - Day 28 - Fri 18th Feb
Everything seems blue today. In a good way. The sky is the most clear blue, and the trip to the hospital, with the clear city landscape around us was amazing. Michael, the shuttle driver was playing some Muddy Waters and was telling us about a few places where you could catch the blues. Hopefully, we will do that on Sunday.
We are also going to watch the St Louis Blues (Ice Hockey) on Tuesday and the Billikens (who play in blue) tomorrow. The reason for this more tourist like activity - well, we are being joined in St Louis by our great friend Wayne and his daughter, Charlotte. While Ev knows that Wayne is joining us, he doesnt know about Charlotte coming. I cant wait to see the look on his face. Which will actually be in the next hour, they have just landed as I write this. It will be so good for Evan - he has been through so much, and im sure he is SO bored of spending all his time with me. So, in amongst the last couple of PT sessions and some PT homework, we will try and get out and about. Weather permitting... there is the still the chance that it could turn for the worse.
Earlier in the day, we had skyped school which was absolutely great (although was a little shy to start with) and the PT with Erica was great also. Did some really good work - am constantly amazed by his effort. Afterwards, I said "good work, Ev!" and he said "No it wasnt work- it's just exercise..."
Apologies for the shorter blog than usual, but we have to go get ready for our guests, and let the weekend begin.
Sure aint got the blues ....... !!!!
Busy, Busy, Busy - Day 27 - Thursday 17th Feb
A very busy day today, albeit with a slow start. Ev woke up at 7am (oh, how I hope that continues when we get home....) and we got ready (which included a set of good stretches - left hamstring and heel-cord are definitely still a bit sore. Will need to work on this) then sauntered down to breakfast at 9am (for the last half-hour).
A few weeks of cooked breakfast gets a bit much, so I have been on Frosties, OJ and Coffee for the last couple of weeks. I know - brit abroad.... Ev was still a bit fed up as his tooth wasnt for moving, but I managed to get him to tuck in. On the way to the lift, back to the room, Ev tugged on my sleeve and gave me a big grin. Actually, one little bit less than a big grin. His tooth had come out - we arent sure where. So - not only do we have to handle the UK/US conversion of the tooth fairy, there is a missing piece of evidence to consider as well. Try explaining how this will work out...
We popped up to see the Fox family and make arrangements to meet up later in the day and then back down to the room to Skype home. Even Sam, the usually elusive youngest child made a visit. Im sure he has missed us, but he hasnt wanted to speak to us before, but he wanted to have a proper conversation with Ev and said "I've been to America with you....". He can even spell out his name on the PC and send it as a skype-message. The little things you miss....
Then we were at the hospital for an 11am PT session with Mike. This went well, Ev walked 13 minutes and 4 seconds at 0.6 mph. Which we think is a great achievement. Most treadmills start at 0.5mph but specialist PT ones go down to 0.2mph. However, Mike and Erica think we can get a standard one - and it will be fine for him. Plus easier to source. He also did a bit on the total gym and a small wipeout zone. I lost, again. So I am 0-2 in the Whitton Wipeout Challenge.
Quick lunch then called the shuttle bus to get back to the hotel. Ev had a piece of homework - I got him to write his letter to the Tooth Fairy - strange, he is willing to do some writing when there are dollars in it for him ! He also wanted to do another circuit. The trick with homework, whether PT or school, is to make it look like something else. So, his circuit target was to go further than yesterday. Which he did with flying colours. It is shown here, in it's entirety (over two parts):
We had an hour, in which Ev took a well-deserved rest, and we stumbled across the American version of "Hole in the Wall". Crikey, it was poor. The "good" (?) thing about the UK version (I sincerely hope) is that
it's done tongue in cheek - whereas the US version is kinda serious - and dont get me started on the catchphrase ("show me the hole in the wall !!!"....). Anyway, I digress... We had a quick "good-night skype" with Loup who is struggling with scurryings in the attic. Possibly, Mice, Squirrels or very heavy footed Spiders.... and then met up with the Foxes for an early dinner. The reason for this was that we had to get back for Winter Wipeout. Priorities!
As it was such a nice evening, and we were a little early, we took a little walk and found a nice street of bars. We sat outside one bar and had a drink, while the kids played on their DS' of course! It was quite humid, yet relaxed and reminded me of an evening on an early summer holiday. As I mentioned previously, this isnt a holiday but now that we have only a few PT sessions left and our friends are joining us, there is the opportunity to turn this into something resembling a holiday. Ev's been through a lot - we simply take for granted sometimes what we are putting them through - so he deserves a little fun. Real shame that we cant include the whole family but we will try our best.
The day still wasnt finished - we had a lovely meal at Applebee's and then got back to the hotel in time for PJ's on, teeth brushed, and positioned ready to watch Winter Wipeout.
As I said last week, there is nothing more wonderful than sitting with your child watching something like this. When the first break kicked in, Ev said "that was the best 11 minutes of my life".
Money well spent then...
Once it was finished I had to try and get him to wear his night braces and, as he was starting to rub a little on one heel, I was looking forward to this even less than I expected. However, as with everything this trip, he simply said "ok" and let me put them on. He's asleep now. Happy little soldier, after a busy long day !
Thursday 17 February 2011
500 steps! - Day 26 - Wed 16th Feb
Another lovely day in St Louis.
In the same way that ice-rain was a surprise, so are the slightly humid spring days that we are now experiencing. Two weeks ago, everyone was wearing massive winter coats, scarves, hats and having to scrape literally inches of ice from their windscreens. This week, by comparison, people are out jogging and I havent needed my coat for best part of two weeks....
As mentioned in the last couple of blogs we are winding down to the last few hours, even minutes of PT and the team are still really impressed with Ev's progress. We are so keen to try and squeeze every drop out of these last few days but it's a balancing act as we dont want to exhaust him, and it's now feeling like the end of a long trip. Today, he tried to do some work on the bounceboard - which is basically a trampoline, set at an angle, which you throw a ball onto and it returns it. Before he can do this, Ev has to stand tall (supported). This is really tough work for him and he did struggle a little.
Next up was the biodex machine. This measures the strength of Ev's legs by applying force while he is sat down and he has to fight against that.
He has been measured at various stages and, notwithstanding the impact of the second op, he has moved from 59 / 72 (left leg / right leg) to 71 / 71. Which is really impressive as it is tangible proof that he is building up.
Finally, he did some basketball hoops, which were revisiting the standing up from earlier.
Once we got back to the hotel, and had had some lunch, I managed to talk Ev into doing some extra work. Anyone who knew Evan before the op will know that he is full of energy, even if his body couldnt always catch up - but he definitely seems more tired, generally. Obviously, part of this is the impact of the ops and the PT but he isnt able to get about as much, so there could be a bit of lethargy building up.
Anyway, we did the circuit which we had designed previously. We walked from our room to the lift, went down to the lobby and did a couple of laps, then back into the lift, and back into the room. [The hotel staff are obviously used to seeing the hotel lobby being used as a training track and he was greeted with calls of "good work, buddy", kind words and smiles from everyone we passed.]. He walked well over 500 steps. In many respects, he is sort of back to where he was before the op. In fact, he could probably do much more, much quicker, but with much less quality. He is now placing his feet down strongly, firmly and flatly. So much improvement - which gives him a massive platform from which to launch himself from. Perhaps even literally....
All that said, it wasnt plain sailing and we (well, HE) had a few things to cope with. The following makes his progress even more remarkable. Firstly, one of his front, top teeth is coming out and has been really lose for the last couple of days. It seems to be really sore and every time he tries to eat or drink he winces. Secondly, kids with CP tend to suffer from constipation and Ev is at the moment. 'nuff said.....
Unfortunately, things caught up with him and he didnt want to stick around at tea with Jack, Holly and Lucy. It was a shame but, in the circumstances, i'll let him have a rare moment of grumpiness. I'd also like to think that he really wanted to get back to bed as we were on the last three chapters of Charlie and the Chocloate Factory. (Now finished).
We still werent finished there as we got the night-splints today. These are similar to the braces which we have for during the day and they continue to stretch out his hamstrings and heel cords. So, I put them on, strapped in his feet and left him to settle down. Long story, short... (well, 30 minutes) I gave in. He was so clearly uncomfortable with all three things going on that I just couldnt do it. Hopefully, a delay of one day wont have a massive impact, and I probably should have been tougher, but he has worked so hard....When I took them off he said, "thank you, Daddy - thank you so much, I feel better now". He certainly knows how to charm, and he was indeed sleeping in about 5 minutes.
Finally, our special guests are safely in the USA and we will see them in less than 48 hours. Cant wait to see his face when they arrive....
In the same way that ice-rain was a surprise, so are the slightly humid spring days that we are now experiencing. Two weeks ago, everyone was wearing massive winter coats, scarves, hats and having to scrape literally inches of ice from their windscreens. This week, by comparison, people are out jogging and I havent needed my coat for best part of two weeks....
As mentioned in the last couple of blogs we are winding down to the last few hours, even minutes of PT and the team are still really impressed with Ev's progress. We are so keen to try and squeeze every drop out of these last few days but it's a balancing act as we dont want to exhaust him, and it's now feeling like the end of a long trip. Today, he tried to do some work on the bounceboard - which is basically a trampoline, set at an angle, which you throw a ball onto and it returns it. Before he can do this, Ev has to stand tall (supported). This is really tough work for him and he did struggle a little.
Next up was the biodex machine. This measures the strength of Ev's legs by applying force while he is sat down and he has to fight against that.
He has been measured at various stages and, notwithstanding the impact of the second op, he has moved from 59 / 72 (left leg / right leg) to 71 / 71. Which is really impressive as it is tangible proof that he is building up.
Finally, he did some basketball hoops, which were revisiting the standing up from earlier.
Once we got back to the hotel, and had had some lunch, I managed to talk Ev into doing some extra work. Anyone who knew Evan before the op will know that he is full of energy, even if his body couldnt always catch up - but he definitely seems more tired, generally. Obviously, part of this is the impact of the ops and the PT but he isnt able to get about as much, so there could be a bit of lethargy building up.
Anyway, we did the circuit which we had designed previously. We walked from our room to the lift, went down to the lobby and did a couple of laps, then back into the lift, and back into the room. [The hotel staff are obviously used to seeing the hotel lobby being used as a training track and he was greeted with calls of "good work, buddy", kind words and smiles from everyone we passed.]. He walked well over 500 steps. In many respects, he is sort of back to where he was before the op. In fact, he could probably do much more, much quicker, but with much less quality. He is now placing his feet down strongly, firmly and flatly. So much improvement - which gives him a massive platform from which to launch himself from. Perhaps even literally....
All that said, it wasnt plain sailing and we (well, HE) had a few things to cope with. The following makes his progress even more remarkable. Firstly, one of his front, top teeth is coming out and has been really lose for the last couple of days. It seems to be really sore and every time he tries to eat or drink he winces. Secondly, kids with CP tend to suffer from constipation and Ev is at the moment. 'nuff said.....
Unfortunately, things caught up with him and he didnt want to stick around at tea with Jack, Holly and Lucy. It was a shame but, in the circumstances, i'll let him have a rare moment of grumpiness. I'd also like to think that he really wanted to get back to bed as we were on the last three chapters of Charlie and the Chocloate Factory. (Now finished).
We still werent finished there as we got the night-splints today. These are similar to the braces which we have for during the day and they continue to stretch out his hamstrings and heel cords. So, I put them on, strapped in his feet and left him to settle down. Long story, short... (well, 30 minutes) I gave in. He was so clearly uncomfortable with all three things going on that I just couldnt do it. Hopefully, a delay of one day wont have a massive impact, and I probably should have been tougher, but he has worked so hard....When I took them off he said, "thank you, Daddy - thank you so much, I feel better now". He certainly knows how to charm, and he was indeed sleeping in about 5 minutes.
Finally, our special guests are safely in the USA and we will see them in less than 48 hours. Cant wait to see his face when they arrive....
Wednesday 16 February 2011
It's up to us - Day 25 - Tues 15th Feb
For the last 25 days we have been in the cocoon which is the SDR family experience. Even with the outside influence of other families (for us, the Smithson, Wardleworth, Rashbrook and Fox families), the hotel and hospital staff as well as our ubiquitous friends; gmail, facebook, twitter and the bbc football page, it is very easy to get used to it. You even get used to not being home - to a degree. Every day you do the exercises and stretches and get to PT. Each day of PT is different, is building up the kid's muscle memory and giving them the tools and techniques that they need to change their lives. However, at the end of the day it is up to them, and equally as importantly it is up to us, to make the use of those tools. Obviously (given that it was 7 yesterday) we now have just 6 hours of PT to go. I cant actually begin to comprehend how we are going to get from here to there. Or even where "there" might be....
As we get into the last 10 days or so, it's nearly as scary to be looking forward to leaving, as it is wonderful to be looking forward to getting home (although going home definitely wins!). It's going to be up to us to make the most of this wonderful opportunity that we have been given. A lot of pressure to be honest but Evan, like all of the SDR kids that we have met, seems to have this inherent determination and intent to succeed.
Each day, even when he has been a bit down, Ev has really put every ounce of himself into PT and it's a bit humbling, but also inspiring. So much effort sometimes, that he is simply shattered afterwards. He did an unbelievably good session today - 16 minutes 27 seconds on the treadmill (forwards, backwards and sideways), did some good work on the total gym and then did a mini version of the wipeout zone, which Erica masterminded. (He has asked me to point out that he beat me,and therefore is current reigning champion of "Whitton Wipeout").
It's going to be tough, but I think we are in safe hands...
Tuesday 15 February 2011
7... - Day 24 - Mon 14th Feb
On the way back home from PT, in yet another gloriously sunny St Louis day (who'da thought it...), I realised that this was the number of hours of PT that we had left. Doesnt really seem that much - even with the progress that Ev made last week and the more positive experience of sunday.
First thing in the morning, Ev did a real good set of stretches but he was still unsure on his frame. (see below).
Before looking at this clip, please note it's not a particular happy one, but is relevant later on....
The PT session itself was good, however as Mike let Ev do a bit more himself (such as not holding onto him as much on the treadmill) it had the feeling that he was taking a small step backwards. Even though I know this isnt the case. In fact, we have a couple of goals (which I dont really want to disclose here) but Mike thinks we are still on track. We were also provided with his new braces during this session so we had a shoe shopping trip to sort out.
So, in the afternoon, we popped down to Footlocker, and we picked up a pair of sneakers ("sneakers" ? ~ well, when in Rome...) that fitted over Ev's new braces. My homework for the afternoon was to try and be a little less "hands-on" with his walker so that he could both build up his strength and confidence on it. Working under the subterfuge of doing the laundry (the lengths a parent will go to...) I got Ev to walk down the hall on his frame. This is literally a distance of no more than 5 meters. However, I got him to stand still and tall on his frame while I went back to the room for the washing then again for the detergent. Then also got him to stand still in the laundry room while I put the washing in.
Mike had explained that his braces would help - but I didnt realise this much.... ! Totally different from the attempt earlier in the day.
So far, so good and I felt that I had probably got a B+ for my homework. However, Ev now knew what he could do. So when I opened the laundry room door for him, he was off. So I left him to it. He took a few steps on his own, and was soon counting the number of steps - which was now 90, 91, 92,.... I dashed for the camera and managed to get the following clip.
I was amazed, gobsmacked, dumbfounded. In the end, he got to 152 steps and already has his sights set on 200 tomorrow. I think we might well have an "A" for our homework....
First thing in the morning, Ev did a real good set of stretches but he was still unsure on his frame. (see below).
Before looking at this clip, please note it's not a particular happy one, but is relevant later on....
The PT session itself was good, however as Mike let Ev do a bit more himself (such as not holding onto him as much on the treadmill) it had the feeling that he was taking a small step backwards. Even though I know this isnt the case. In fact, we have a couple of goals (which I dont really want to disclose here) but Mike thinks we are still on track. We were also provided with his new braces during this session so we had a shoe shopping trip to sort out.
So, in the afternoon, we popped down to Footlocker, and we picked up a pair of sneakers ("sneakers" ? ~ well, when in Rome...) that fitted over Ev's new braces. My homework for the afternoon was to try and be a little less "hands-on" with his walker so that he could both build up his strength and confidence on it. Working under the subterfuge of doing the laundry (the lengths a parent will go to...) I got Ev to walk down the hall on his frame. This is literally a distance of no more than 5 meters. However, I got him to stand still and tall on his frame while I went back to the room for the washing then again for the detergent. Then also got him to stand still in the laundry room while I put the washing in.
Mike had explained that his braces would help - but I didnt realise this much.... ! Totally different from the attempt earlier in the day.
So far, so good and I felt that I had probably got a B+ for my homework. However, Ev now knew what he could do. So when I opened the laundry room door for him, he was off. So I left him to it. He took a few steps on his own, and was soon counting the number of steps - which was now 90, 91, 92,.... I dashed for the camera and managed to get the following clip.
I was amazed, gobsmacked, dumbfounded. In the end, he got to 152 steps and already has his sights set on 200 tomorrow. I think we might well have an "A" for our homework....
Sunday 13 February 2011
Sunny Day - Day 23 - Sun 13th Feb
If the last couple of days had been decidedly cloudy and overcast, today has been absolutely sunny. Not only in terms of how Evan has been, but outside also - it's absolutely glorious right now. Even stranger since it's less than two weeks ago that we had ice-storms, snow and -10c temperatures. Could well be about +10c today.
[above photo is view from our hotel room]
We got up this morning and, seeing what a nice day it was, I decided that we would make the best of it - and the best (only) way of doing this was to attack it face on. So, there I was ready to give us a kick up the backside and get us going but Ev had beat me to it and jumped out of the right side of the bed (not literally, of course).
After breakfast we skyped with home (even Sam took part for less than a flying 5 second visit), then to Grandma Skipton, then to Matthew & Rebecca, then to home again as Grandma Silsden was there and then to Grandad Skipton. Gone was the reluctant and hesitant Evan and was replaced with the talkative, expressive and actually quite giddy little fella that we know and love.
We decided to head off to the planetarium (attached to the science centre) and there was none of the "im bored", "can we go" and "dont want to do that" which was a feature of our trip last week (the day after the others had left) or from yesterday towards the end of the mall trip. We had a really good time - revisited a couple of our favourites from last time and also took in "Sea-Rex" which was in the Omnimax theatre (sort of like the IMAX). A 3-d film show of underwater reptiles. Ev's review of this was "that was really good - enjoyed it a lot".
Now, i'd like to put this improvement down to the weather, or my attitude, but I know it's mostly down to Evan. When we did his exercises this morning he seemed a little less stiff and even managed a few steps with the walker. Also, when placing him in his wheelchair, his feet didnt extend into his footholds. He just seemed so "clenched up". However, he seemed much more flexible today and he could fully get his feet into the footholds.
I know what it's like when i've had a knock or a sprain playing footy and how it can impact your general mood, so I cant begin to understand how much he has had to cope with over the last couple of weeks, but im so proud of him today. I just hope, fingers crossed, that he is over the worse and he can start to build on this - given what he has achieved so far, it could be a big couple of weeks !
[above photo is view from our hotel room]
We got up this morning and, seeing what a nice day it was, I decided that we would make the best of it - and the best (only) way of doing this was to attack it face on. So, there I was ready to give us a kick up the backside and get us going but Ev had beat me to it and jumped out of the right side of the bed (not literally, of course).
After breakfast we skyped with home (even Sam took part for less than a flying 5 second visit), then to Grandma Skipton, then to Matthew & Rebecca, then to home again as Grandma Silsden was there and then to Grandad Skipton. Gone was the reluctant and hesitant Evan and was replaced with the talkative, expressive and actually quite giddy little fella that we know and love.
We decided to head off to the planetarium (attached to the science centre) and there was none of the "im bored", "can we go" and "dont want to do that" which was a feature of our trip last week (the day after the others had left) or from yesterday towards the end of the mall trip. We had a really good time - revisited a couple of our favourites from last time and also took in "Sea-Rex" which was in the Omnimax theatre (sort of like the IMAX). A 3-d film show of underwater reptiles. Ev's review of this was "that was really good - enjoyed it a lot".
Now, i'd like to put this improvement down to the weather, or my attitude, but I know it's mostly down to Evan. When we did his exercises this morning he seemed a little less stiff and even managed a few steps with the walker. Also, when placing him in his wheelchair, his feet didnt extend into his footholds. He just seemed so "clenched up". However, he seemed much more flexible today and he could fully get his feet into the footholds.
I know what it's like when i've had a knock or a sprain playing footy and how it can impact your general mood, so I cant begin to understand how much he has had to cope with over the last couple of weeks, but im so proud of him today. I just hope, fingers crossed, that he is over the worse and he can start to build on this - given what he has achieved so far, it could be a big couple of weeks !
Up and Down day - Day 22 - Friday 12th Feb
Today was very much a mixed day. The weekends are time off from PT, but while it gives Ev a chance to recover, it does leave the days to be filled (and it is the reason why we are here, after all). The start of the day was very exciting for Evan as we had planned to go the "The Galleria" which is the local mall. He had amassed the correct number of "Galleria points" (awarded for certain PT and homework tasks) to be able to buy Wipeout:The Game for his wii. So, we made a bee-line for Game-Stop and the purchase was made. (Just hope my specially chosen contact can help sort out the compatibility issues out....)
One happy child. Although there is only so much you can do in a shopping mall with a 6-year old in a wheelchair, and he was getting bored - especially as the game was burning a hole in his pocket. As we went for lunch (at the very highly recommended Cheesecake Factory) he dipped a little and started to talk about going home (that's home home, not just the hotel) so that he could play the game, but im sure it was a way of engaging his very evident home-sickness (and perhaps a little cabin-fever as well). He got a little upset, if truth be told. Which manifests itself in his wanting to "do nothing" and tells me off for everything I do - looking at him, not looking at him, etc - the absurdity of it usually makes him laugh pretty soon so I dont mind playing along.
So, we stood in the car-park, in the lovely St Louis spring (?) - best weather so far - waiting for the taxi. We got back to the hotel about 2pm which was 8pm back at home, so Loup was ready to Skype. It's really difficult as he doesnt always want to speak, which is difficult for everyone. Anyway, after a couple of hours we read his book again - all three of us (Ev, Loup and I) and he finished off the skype with a smile.
Since then, about 3 hours ago, he still hasnt been able to get to sleep. I know he is tired, exhausted even, but the effort spent on PT and recovery from the Ops is different to his usual day-to-day effort - and as a result he is struggling to sleep. Im also sure that he is going over things in his mind as well - so his insomnia is quite possibly as a result of that as well. You know what it's like when your mind is full of worries - why should that not be the case for a clever, thoughtful, 6 year old.
As I write this (8:30pm) he is still not asleep so I have promised to go to bed myself as he said that would help. At least, since I found a Wipeout re-run at 7pm he has picked up a little bit and was laughing and joking. I guess when you are a bit down you need your favourite stuff to lift you up.
Not sure what tomorrow will bring.... it's quite difficult, as I mentioned before ~ we arent on a holiday but we need to fill the time, which is difficult as Evan really isnt yet up to everything either. We will hopefully do some skyping in the morning - although it very much depends on how he feels and then perhaps visit the Planetarium. Think that will be good, and would tick a homework box as well...
Next week will pick up as we have a busy day (relatively) on Monday and then our special guests (one being a surprise!) arrive on Friday - so the last week will definitely be busy.
Well, i'm off to bed (8:47pm) - g'night!
One happy child. Although there is only so much you can do in a shopping mall with a 6-year old in a wheelchair, and he was getting bored - especially as the game was burning a hole in his pocket. As we went for lunch (at the very highly recommended Cheesecake Factory) he dipped a little and started to talk about going home (that's home home, not just the hotel) so that he could play the game, but im sure it was a way of engaging his very evident home-sickness (and perhaps a little cabin-fever as well). He got a little upset, if truth be told. Which manifests itself in his wanting to "do nothing" and tells me off for everything I do - looking at him, not looking at him, etc - the absurdity of it usually makes him laugh pretty soon so I dont mind playing along.
So, we stood in the car-park, in the lovely St Louis spring (?) - best weather so far - waiting for the taxi. We got back to the hotel about 2pm which was 8pm back at home, so Loup was ready to Skype. It's really difficult as he doesnt always want to speak, which is difficult for everyone. Anyway, after a couple of hours we read his book again - all three of us (Ev, Loup and I) and he finished off the skype with a smile.
Since then, about 3 hours ago, he still hasnt been able to get to sleep. I know he is tired, exhausted even, but the effort spent on PT and recovery from the Ops is different to his usual day-to-day effort - and as a result he is struggling to sleep. Im also sure that he is going over things in his mind as well - so his insomnia is quite possibly as a result of that as well. You know what it's like when your mind is full of worries - why should that not be the case for a clever, thoughtful, 6 year old.
As I write this (8:30pm) he is still not asleep so I have promised to go to bed myself as he said that would help. At least, since I found a Wipeout re-run at 7pm he has picked up a little bit and was laughing and joking. I guess when you are a bit down you need your favourite stuff to lift you up.
Not sure what tomorrow will bring.... it's quite difficult, as I mentioned before ~ we arent on a holiday but we need to fill the time, which is difficult as Evan really isnt yet up to everything either. We will hopefully do some skyping in the morning - although it very much depends on how he feels and then perhaps visit the Planetarium. Think that will be good, and would tick a homework box as well...
Next week will pick up as we have a busy day (relatively) on Monday and then our special guests (one being a surprise!) arrive on Friday - so the last week will definitely be busy.
Well, i'm off to bed (8:47pm) - g'night!
Saturday 12 February 2011
Tired - Day 21 - Friday 11th Feb
Im struggling to know what to write today. In many respects it's groundhog day - we wake up, we try to stay in bed a little while - Ev with his Scooby DVD while I catch up on the online updates that have occured overnight (given that we are 6 hours behind), we go to breakfast, we have PT, we try to kill some time, we get back to the hotel, bit more online catch up - as people are usually heading to bed back home, and then Ev will go to bed and I will try and find something to watch on TV before I go to bed as well.
However, that's only really a template and each day has many different things to try and report. For instance, we tried to do some walking on his frame this morning (before and after breakfast) but he really struggled. At one point he was in floods of tears and I couldnt work out why. It was made even worse by him sobbingly apologising to me. Once we got to PT we did agree he is a little sore on his left side and it took a lot of stretching to be able to get him onto the treadmill (which he then did really well - the amount of effort he wants to put into PT for Erica and Mike fills me with so much pride and I hope you can see some of this effort and determination in the video clips which we have put online). One thing for me to try is to remove his plaster on his left hamstring as it could be that which is irritating him rather than anything deeper. If you look at this video clip you will see that he is a little more tentative on his left hand side. I almost cant watch it without wanting to go and hug him.
But, in that respect, im quite lucky. As I can go and hug him.
Ev was so tired that he asked to go to bed at about 4pm.Which was just the time that Loup skyped us after visiting some friends. I was also in the middle of trying to remove the plaster. What followed was an awful 20 minutes. Ev insisted that I continue, against my better judgement, as he knew it needed doing (far too grown up...), but Loup had to watch online, totally helpless, as he screamed with agony while I managed to ease it off. I swear that I did it as gently as possible, and it was probably only a minute - less probably - but that last bit of pulling off a plaster is always awful. I cant believe how difficult it was for Loup to watch. But, as bad as it was, the following 20 minutes were the sort you just wish you could bottle and enjoy over and over again. We managed to to calm Ev down with the promise of reading his book; Charlie and the Chocolate Factory. He insisted on listening to me, but being laid so that he could look at Loup. 4,000 miles away, but so close he could see her smile...
Friday 11 February 2011
Humongous - Day 20 - Thurs 10th Feb
I was struggling for a title for today's blog as it's been a busy one, so I asked Evan to describe his day and he came up with "humongous". I guess it's pretty fitting, not only for today but for the last twenty days as well.
On Wednesday night, when I put Ev to bed, I was a bit concerned about his right hamstring as it seemed a bit sore so I wanted to keep an eye on this, but overnight he only woke up a couple of times. As opposed to the numerous times the evening before. He had been given some "PT homework" of 15 "sit-to-stands" and while the 5 we did last night were difficult, the two sets of 5 that we did this morning (5 before breakfast, 5 after) seemed much easier. However, the "extra credit" (to get a candy bar) of some walking on his frame was beyond us. He just seemed so tight in his legs - and you can understand why if you see the pictures from yesterday's blog.
When we got to PT, we had to own up to Mike that we hadnt done the extra credit and he said Ev could try and do it at the beginning of the session. It was really difficult to watch, he was still a bit cautious of fully extending his legs and was all "crouched up" and grimacing throughout. (Mike confirmed his hamstrings looked fine). So, it was with true amazement that he was straight onto the treadmill. However, as you can see (other clips on YouTube at
As we had a free afternoon, we popped back to the hotel and then out to Hard Rock cafe. He actually had a bit of a dip and went grumpy - combination of everything I guess, big effort in the morning, generally tired, bit overwhelmed and I guess - most of all - homesick ! Living in a hotel (as nice as it is) is bad enough, being away from family, friends, schoolmates, usual routine, etc is difficult for me and I would definitely hold my hand up to being homesick, so not sure how Ev is feeling (throw in a couple of operations, PT, etc...). So I let him have a bit of a quiet spell, but they dont last long and he is soon back smiling. We did manage to pop to a couple of shops in the Union Station (http://www.stlouisunionstation.com/) but he wanted to go home so we called for the shuttle. He was clearly zapped as he didnt want his DS ("what !?" I can hear you say....) and just leant on me for the rest of the journey home.
So, we headed back to the hotel and had a quiet afternoon. Will need to do our PT homework in the morning (I guess it's always the case that you do your homework at the last minute...) as he spent all afternoon on the bed - watching a bit of DVD, Skyping Loup (who is STILL on STL time!) and then we read a chunk of Charlie & the Chocolate Factory.
However, probably the highlight of his 20 days so far was that we FINALLY got to watch Winter Wipeout on TV, and he insisted that I watched it with him. Not a problem. An hour full of giggles,cuddles, and the soundtrack for watching TW ~ "oof!", "ooh", "ow", "ouch", "wow", "no way" and "umph".
Some times life is humongous, other times it's pretty simple....
On Wednesday night, when I put Ev to bed, I was a bit concerned about his right hamstring as it seemed a bit sore so I wanted to keep an eye on this, but overnight he only woke up a couple of times. As opposed to the numerous times the evening before. He had been given some "PT homework" of 15 "sit-to-stands" and while the 5 we did last night were difficult, the two sets of 5 that we did this morning (5 before breakfast, 5 after) seemed much easier. However, the "extra credit" (to get a candy bar) of some walking on his frame was beyond us. He just seemed so tight in his legs - and you can understand why if you see the pictures from yesterday's blog.
When we got to PT, we had to own up to Mike that we hadnt done the extra credit and he said Ev could try and do it at the beginning of the session. It was really difficult to watch, he was still a bit cautious of fully extending his legs and was all "crouched up" and grimacing throughout. (Mike confirmed his hamstrings looked fine). So, it was with true amazement that he was straight onto the treadmill. However, as you can see (other clips on YouTube at
As we had a free afternoon, we popped back to the hotel and then out to Hard Rock cafe. He actually had a bit of a dip and went grumpy - combination of everything I guess, big effort in the morning, generally tired, bit overwhelmed and I guess - most of all - homesick ! Living in a hotel (as nice as it is) is bad enough, being away from family, friends, schoolmates, usual routine, etc is difficult for me and I would definitely hold my hand up to being homesick, so not sure how Ev is feeling (throw in a couple of operations, PT, etc...). So I let him have a bit of a quiet spell, but they dont last long and he is soon back smiling. We did manage to pop to a couple of shops in the Union Station (http://www.stlouisunionstation.com/) but he wanted to go home so we called for the shuttle. He was clearly zapped as he didnt want his DS ("what !?" I can hear you say....) and just leant on me for the rest of the journey home.
So, we headed back to the hotel and had a quiet afternoon. Will need to do our PT homework in the morning (I guess it's always the case that you do your homework at the last minute...) as he spent all afternoon on the bed - watching a bit of DVD, Skyping Loup (who is STILL on STL time!) and then we read a chunk of Charlie & the Chocolate Factory.
However, probably the highlight of his 20 days so far was that we FINALLY got to watch Winter Wipeout on TV, and he insisted that I watched it with him. Not a problem. An hour full of giggles,cuddles, and the soundtrack for watching TW ~ "oof!", "ooh", "ow", "ouch", "wow", "no way" and "umph".
Some times life is humongous, other times it's pretty simple....
Wednesday 9 February 2011
Tough to watch - Day 19 - Wednesday February 9th
Today started with a real treat for Evan - he got to Skype his classmates as well as Mrs Smith, Mrs Oswald and Mr Nutall. He was a little nervous at the beginning and said he had had his op tomorrow and then said, sort of off-camera to me, that "oops, I messed that up..." but then got into the swing of things and took a q+a session. Even shouting "who's next" at some points and saying, "come on, let's have Josh next". It was really great to see all of his schoolfriends wanting to speak to him, and the look on his face throughout. (Thanks to Nigel for fixing this....)
We had a 1pm PT session so we managed to do some homework and have some lunch before we headed over to Children's. He had been in lots of discomfort overnight and woke a number of times, and was clearly in pain as we were in the shuttle bus (despite the little bit of pain medication I had been able to get down him). Every bounce or lurch of the bus was accompanied with a heart-wrenching grimace on Ev's face.
The session with Erica (from America) was purely to try and stretch out his muscles and it is always a difficult session for all of the kids who have this op. The first part was to move from sitting on a chair to standing and he was clearly not happy with the prospect of just standing up, and couldnt manage it fully. However, he did improve a little bit during the session. What I didnt realise is that his back is linked to his hamstrings, so when I was leaning him forward to put on his coat, or get him into his chair or the shuttle, that all of this would pull on his legs and hurt him. It was tough to watch, real tough and when he says "no more" you take a look at yourself and ask why you have done this, but it's only fleeting as you know what lies at the end of this journey. So you say, "come on, one more time" and try and help find a way to make it easier to endure but still to be done.
He then did a slot on the total gym and was able to stretch his legs fully (very much supported by Erica) but you could see that slight improvement since the beginning of the hour.
In fact, as I write this we have just completed the "homework" of 5 sit-to-stands and he seemed not too bad. Only mild grimacing this time. So much for him to put up with, but he is so determined he puts most people to shame. Definitely me.
Wires2 - Day 18 - Tuesday 8th Feb
I was hoping for a lie-in this morning, not because I wanted a lie-in (although....) but because we were due at the hospital at 9:45 for Ev to have his hamstring and heel cord lengthening op, and he was nil-by-mouth. Although he could have a little clear liquid before 7:30, it was still difficult for a little boy who loves his breakfast. So, a 5:53 start wasnt ideal (in more than one respect) but we switched on the new baby-sitter (Scooby Doo DVD) and Ev laid happily enough watching this for a couple of hours until we got dressed and caught the shuttle to Children's.
It was pretty much the same schedule as with the first op, but with the obvious (massive) exception that Loup wasnt with us... :( ~ and also when they came to wheel him off they wheeled me off as well. Literally. They said that as kids know what's coming with two ops in two weeks they try to keep someone with them that they know. So, I had the experience of seeing him "go under" - which isnt really something to recommend for a parent, but it was what Ev needed.
As with the SDR, it was back to a waiting cubicle and I busied myself with the laptop - couple of emails, facebook updates, twitter updates, news from work, etc, so it was simple to pass the time until I got the call from Dr Dobbs himself. We knew they were lengthening both hamstrings and the right heel cord but they were going to take a look at the left, which they did indeed lengthen a little bit. He was so nice, and provided a full update - just minutes after completing the surgery. It's testament to the entire hospital that I have never felt worried about leaving Ev with them. I know he has been in the safest hands possible.
I then got a second call to go through to recovery. This was tougher than last week as he was coming out of anaesthetic and a little upset. He gets anxious when laid on his back and his problem was that he wanted (a) a hug, (b) someone to hold his hands so he could feel safe and (c) a bigger hug. I managed to complete all three tasks - although a little sad that I was stealing someone else's job. I hope i'm an adequate replacement (but, let's face it guys - Dad's should know their place.... )
We then moved up to Ward 10. Sandy passed us onto Lydia - there have been so many people who come and go and you never really get chance to speak to them but they are truly fantastic and clearly love working in an environment that is massively rewarding and massively sad in equal measure.
I'd actually broken a promise to Ev that he wouldnt have all of the wires. He had one - providing saline until he had plenty to drink, so the deal was that it would go when he had been able to have a drink and something to eat. He was still very groggy and I was 50/50 whether we would need to stay in overnight - but, as ever, Ev was remarkable and was soon tucking into Chicken fingers, fries, grean beans, choc milk and chocolate cake - all delivered by the Moose Brigade (dont ask....). In fact, it was the best he has eaten since we got to STL.
One of Dr Dobbs' team came to check on Ev and was happy for him to leave on the condition that everything was ok (peeing, eating without puking, - you know, the usuals...) as well as getting the ok from the PT that he was ok to be transferred to/from the wheelchair. I passed this test and we were "good to go". I got Ev dressed and he grimaced every time I touched him - this was the worry that I had, how to get him home without causing him massive discomfort or even significant damage. We have about a 10/15 minute trip home but having had two bouts of surgery on back, then hamstrings and heels it's difficult to find somewhere that you can get hold of to get him into the shuttle/taxi.
Arnold arrived in the hotel's shuttle bus and it was the moment of truth - how to get him in. I said to Ev, that he needed to help me as I didnt want to hurt him but if he worked with me it would be ok. He immediately snapped his DS together (losing his place - a massive sacrifice) and looked at me. He was a little pale but still had those big blue eyes. He saluted (learnt earlier from the Scooby Doo DVD) and said, "Dad, I wont let you down !".
No Evan, you never do...
It was pretty much the same schedule as with the first op, but with the obvious (massive) exception that Loup wasnt with us... :( ~ and also when they came to wheel him off they wheeled me off as well. Literally. They said that as kids know what's coming with two ops in two weeks they try to keep someone with them that they know. So, I had the experience of seeing him "go under" - which isnt really something to recommend for a parent, but it was what Ev needed.
As with the SDR, it was back to a waiting cubicle and I busied myself with the laptop - couple of emails, facebook updates, twitter updates, news from work, etc, so it was simple to pass the time until I got the call from Dr Dobbs himself. We knew they were lengthening both hamstrings and the right heel cord but they were going to take a look at the left, which they did indeed lengthen a little bit. He was so nice, and provided a full update - just minutes after completing the surgery. It's testament to the entire hospital that I have never felt worried about leaving Ev with them. I know he has been in the safest hands possible.
I then got a second call to go through to recovery. This was tougher than last week as he was coming out of anaesthetic and a little upset. He gets anxious when laid on his back and his problem was that he wanted (a) a hug, (b) someone to hold his hands so he could feel safe and (c) a bigger hug. I managed to complete all three tasks - although a little sad that I was stealing someone else's job. I hope i'm an adequate replacement (but, let's face it guys - Dad's should know their place.... )
We then moved up to Ward 10. Sandy passed us onto Lydia - there have been so many people who come and go and you never really get chance to speak to them but they are truly fantastic and clearly love working in an environment that is massively rewarding and massively sad in equal measure.
I'd actually broken a promise to Ev that he wouldnt have all of the wires. He had one - providing saline until he had plenty to drink, so the deal was that it would go when he had been able to have a drink and something to eat. He was still very groggy and I was 50/50 whether we would need to stay in overnight - but, as ever, Ev was remarkable and was soon tucking into Chicken fingers, fries, grean beans, choc milk and chocolate cake - all delivered by the Moose Brigade (dont ask....). In fact, it was the best he has eaten since we got to STL.
One of Dr Dobbs' team came to check on Ev and was happy for him to leave on the condition that everything was ok (peeing, eating without puking, - you know, the usuals...) as well as getting the ok from the PT that he was ok to be transferred to/from the wheelchair. I passed this test and we were "good to go". I got Ev dressed and he grimaced every time I touched him - this was the worry that I had, how to get him home without causing him massive discomfort or even significant damage. We have about a 10/15 minute trip home but having had two bouts of surgery on back, then hamstrings and heels it's difficult to find somewhere that you can get hold of to get him into the shuttle/taxi.
Arnold arrived in the hotel's shuttle bus and it was the moment of truth - how to get him in. I said to Ev, that he needed to help me as I didnt want to hurt him but if he worked with me it would be ok. He immediately snapped his DS together (losing his place - a massive sacrifice) and looked at me. He was a little pale but still had those big blue eyes. He saluted (learnt earlier from the Scooby Doo DVD) and said, "Dad, I wont let you down !".
No Evan, you never do...
Monday 7 February 2011
Getting used to it - Day 17 - Monday 7th Feb
After a couple of "days off" we were back to it today. We had PT with Mike at 11am, so were still able to have a leisurely stroll to breakfast, then do a bit of homework (just in case Loup is reading this...) before we headed off to the hospital. Was actually quite mild today and a hoody was fine to stay warm (esp as we are pretty much "door to door" with the shuttle bus). Pretty much same temperatures as back home today.
PT was a combination of treadmill (10 minutes, spread over a couple of rest periods) and a mechanism which led to him being christened "puppet boy". Basically, a series of belts, buckles and braces within a metal frame which support his body so he could then be wheeled around to do backwards and sideways walking. All of the physios are so great and Ev never really realises that he is exercising.... certainly in comparison to his stretches which are hard work for him.
We got back to the room just in time to Skype Loup, Maya, Sam and Grandma Silsden. It's obviously difficult for Ev, and i'm sure he is very homesick, but he hasnt shown it. I've tried to turn it into as much fun as possible (we are "big journey buddies"), and im sure im spoiling him a bit more than usual and being more lenient on his "screen-time" but he's doing ok. Unfortunately, he seems to go quiet when it comes to talk of home, and especially when we skyped home. God knows what is going on in his head - so it's understandable that he withdraws a little bit when he sees everyone. I think it will get better over time. He also got a call from Grandma&Grandad Skipton and didnt want to talk much.
We got the call from the hospital to say that his second op is scheduled for 11am - which is the "second slot" so we need to be at the hospital 9:45 (3:45pm UK) for the op at 11 (5pm UK). He can apparently have clear liquids until 7:30am but that doesnt seem intuitively right - so will need to have a word with other parents who have been through the same - thanks to the wonderful SDR Facebook page. (It's not all about "poking people", having farms, being a mafia boss, raising virtual goldfishes, etc. ).
As his plaster has pretty much come off and his scar is healing nicely we can even go for a swim. Which, after the op tomorrow (actually, it's a procedure...) we wont be able to do - so it's the only chance. He loved it - we met up with Holly & Lucy - just a day in and they are getting on really well. They aren't his girlfriends !!!! (Ev would strongy like to point out - they are friends who are girls). He is hosting a Scooby Doo DVD party later on. His NOT-chat-up line was "would you like to come to my room and watch a DVD"....
Not sure what tomorrow will bring - it's supposedly straight-forward (touch wood, touch wood, touch wood, ...) but still something else to worry about. Plus I wont have Loup with me - I promised her I would look after him, but know she will be very concerned and distracted tomorrow (or today, if you are reading this Tuesday morning) as well as being the first day back at work/school-runs since she got back. Ev will be in great hands at the hospital, I'll be ok, but im sure Loup will be in equally great hands if the messages of support are anything to go by. Thanks in advance for looking after her....
Super... Day 16 - Sunday 6th Feb
...bowl final today
...that our family got home safe and sound, and our new friends a day earlier
...new family on the SDR trail
...that Ev has two new friends to play with
...that we have had so many good wishes from home
...,super, just super.
...that our family got home safe and sound, and our new friends a day earlier
...new family on the SDR trail
...that Ev has two new friends to play with
...that we have had so many good wishes from home
...,super, just super.
Sunday 6 February 2011
Home Alone - Day 15 - Saturday 5th Feb
Today was a day that none of us was really looking forward to - but it had to be done to get us to "phase 3" of the Journey. Phase 1 being the Op, Phase 2 being the Family reunion and Phase 3 being the Physio / rehab.
So much time and soul-searching was spent on the best way to organise the trip. Each way we came up with had so many "con's" but, out of all the ways we came up with, this was the "least worst". However, we have to do what we have to do so we got on with it. You will often hear people say "I'd do anything for my kids" - us included, and this is simply that. We just hope that the negative impact of the trip on the whole family is only temporary. As we know the positive impact will be fantasmagorical.
We distracted ourselves with packing and relocating rooms (myself and Ev moving into a smaller room) and then a breakfast where Sam said goodbye to his new friends, who were very taken with him (as most are - especially the ones who dont have to keep up with him). "He's so busy...". Yes, that would cover it...
Even though we had ran through the schedule so many times, when it came to it, it was harder than when seen written down. Wonderful and sweet Maya, who had seemed ok on the trip so far, was very teary but we had a chat and she was fine. Sam, the lovely, lovely, Whirlwind, came up to me and said "I want to stay with you Daddy". We didnt think he understood. On the other hand, Loup was obviously so torn to leave Ev. And then, before we knew it, they were gone. Ev had been handling it fine so far and was even saying we should leave the others in the lobby and go back to our new room. Although when we headed back to the room his lip was quivering and he said he wanted everyone to come back - especially Mummy.
So we sat and watched some tv but he even switched that off and said he just wanted to lay on the sofa for three weeks. Loup called from the airport, and eventually Ev cheered up. We managed to have a nice day, but with lack of PT and no-one around (snow, weekend, etc ?) it seemed very lonely. As I wanted to keep an eye on the flights we stayed at home which meant that it dragged a bit - a 2 hour delay at Chicago cant have been much fun for the travellers but it was also difficult for us as well. We just wanted them to get home safe and sound. As I write this they have just set off in the last hour and should hopefully be home when we wake up.
So much looking forward to when we can Skype them tomorrow. Only 20 sleeps 'til we are a family together at home again.
So much time and soul-searching was spent on the best way to organise the trip. Each way we came up with had so many "con's" but, out of all the ways we came up with, this was the "least worst". However, we have to do what we have to do so we got on with it. You will often hear people say "I'd do anything for my kids" - us included, and this is simply that. We just hope that the negative impact of the trip on the whole family is only temporary. As we know the positive impact will be fantasmagorical.
We distracted ourselves with packing and relocating rooms (myself and Ev moving into a smaller room) and then a breakfast where Sam said goodbye to his new friends, who were very taken with him (as most are - especially the ones who dont have to keep up with him). "He's so busy...". Yes, that would cover it...
Even though we had ran through the schedule so many times, when it came to it, it was harder than when seen written down. Wonderful and sweet Maya, who had seemed ok on the trip so far, was very teary but we had a chat and she was fine. Sam, the lovely, lovely, Whirlwind, came up to me and said "I want to stay with you Daddy". We didnt think he understood. On the other hand, Loup was obviously so torn to leave Ev. And then, before we knew it, they were gone. Ev had been handling it fine so far and was even saying we should leave the others in the lobby and go back to our new room. Although when we headed back to the room his lip was quivering and he said he wanted everyone to come back - especially Mummy.
So we sat and watched some tv but he even switched that off and said he just wanted to lay on the sofa for three weeks. Loup called from the airport, and eventually Ev cheered up. We managed to have a nice day, but with lack of PT and no-one around (snow, weekend, etc ?) it seemed very lonely. As I wanted to keep an eye on the flights we stayed at home which meant that it dragged a bit - a 2 hour delay at Chicago cant have been much fun for the travellers but it was also difficult for us as well. We just wanted them to get home safe and sound. As I write this they have just set off in the last hour and should hopefully be home when we wake up.
So much looking forward to when we can Skype them tomorrow. Only 20 sleeps 'til we are a family together at home again.
Saturday 5 February 2011
Coming and Going - Day Fourteen - Friday 4th Feb
Today we said farewell (for now) to the Wardleworths and the Smithsons. It's been unbelievable really - three families having the same operation, in the same city, within 3 weeks of each other and we all live within 20 miles of each other. While we knew all about Ben's Wish to Walk and had met beforehand - we didnt meet Annabelle and her family until our first night (http://www.annabellerosetrust.org/). However, Ben (Belle's dad) used to work in Skipton and , knows some of my friends and relatives. Also, we both had the same benefactor for our ball as well (which took place within two weeks of each other). Small world. Very small world. It really doesnt seem like two weeks ago - we have made some really good friendships already - including Jack and his family. Im sure that we will all meet up as soon as possible, back in the UK. (Thanks to both families for the ration packs - will keep us going for a while).
However, as they leave we look forward to the Fox family from Manchester. (http://www.happy-feet-appeal.info/) and hope that we can help them settle in.
We had two appointments with Evan today. One with Dr Dobbs who is scheduled to perform procedures on his hamstrings and his right heel cord. Basically (and I apologise to the guys at SLCH for getting this wildly wrong), the spasticity has tightened these areas so they "tweak" the muscles to lengthen them a little bit. They use a slightly different technique to avoid "over-lengthening" which can be a common problem. In the scheme of things, it's a relatively straight-forward outpatient procedure (fingers, arms, legs and eyes crossed) but still a concern for us. However, Ben (S) and Annabelle (W) were both ok within the day. They even suggest a return to physio the day after. Should also be another 4am start...
The second appointment was another PT session with Erica. Another go on the treadmill - loads of improvement (planting his feet better and further forward), total gym (way better control), and then a hybrid game of rugby/soccer/american football - which Evan won despite being on both Blues and Reds (and Erica lost, despite being on Reds and Blues). If I can find the USB cable I will upload some more video - suspect it has been "Sam'd" - it's going to be quiet around here next week...
Friday 4 February 2011
Gateway - Day Thirteen - Thursday 3rd Feb
On Wednesday evening, myself and Maya were lucky enough to get invited to the basketball at SLU (St Louis Uni) by the Smithsons and the Wardleworths. We werent really sure what to expect, but it was awesome - and slightly bonkers. As far as I can tell it's the standard just below professional and is the feeder for the professional game. Sort of somewhere between the NBA and the basketball games off High School Musical (Maya watches it, honest...) or TeenWolf (if you prefer). Certainly had all of the razzmatazz that you would expect. Luckily the "Billikens" (Go Bills!) beat Massachusetts 69-53, Maya bought the standard issue "big finger" as you would expect, and it was a great night out with Maya before she headed home on Saturday, after a week which has certainly helped Evan with his recuperation.
It was built in 1963 as a monument to how St Louis was the Gateway of the westward expansion. So many pioneers came to St Louis, often struggling with the hand that fate had dealt, looking for a fresh start in the (wild) west - hopeful that it would help them fulfil their dreams and be the start of a new life. While looking at the photos that we took, it struck me that all of the SDR families are making a similar trip to St Louis, also looking for the gateway to a new life.
Wednesday 2 February 2011
"Good Job Buddy!" - Day Twelve - Wednesday 2nd Feb
Against a backdrop of the bad weather (although the roads are clear enough, we have heard that flights from Chicago to Manchester are cancelled for today and tomorrow) Ev's first post-discharge PT session was scheduled but we werent sure if we would make it. However, we spoke to the hospital and they said Erica, his PT for today was there, and the hotel shuttle bus was running ok. So, we headed off a little earlier and took in a bite to eat beforehand. We bumped into the Smithsons, who were there after Ben's 11am physio. Good to have a catch up and arrange a last-night get together. Although there could be a couple of these - depending on the weather....
We met up with Erica and went through to the PT area and discussed what he had been doing before the op and in the couple of sessions since. She decided to put him on the treadmill. I looked at Loup and she gave me the look that I suspect was on my face also ~ was she looking at the notes for the right kid ? the one who was only a day out of hospital and who we were handling like a china doll. But no, up he got. He looked a bit unsure at the start but soon got into it, and wanted to go faster and faster. He did 5 minutes which Erica said was really good as usually they only did a couple of minutes to start with. He was even getting a bit giddy, but had this big smile on his face throughout.
After the treadmill (or dreadmill, of course - wipeout fans will understand why) Erica said he could go onto his walker into the next room (more incredulous looks between us....). He was a bit wobbly and he had clearly lost a bit of strength but his feet were so incredibly flat. As opposed to the "Fred Flintstone" method of propelling himself.
The "Total Gym" was next (which of course we had to rename "Total Wipeout Gym") and he did some leg pushes and he had some great control. By this time, we had silly grins on our faces. Next up, was some stand to sitting and he pushed things again. Wanting to do 100 seconds rather than the target of 60. He also did some sitting with his back just off the chair-back (building up stomach muscles) and did a real good couple of bouts of this. Erica seemed most pleased and we just stood there looking like 3 years olds who had just had a dollar bill pulled out of their ear. Ev was clearly shattered but had done so well. So proud.
Tomorrow's session is with "Mad Mike" (SDR families will know all about him) - not sure what will happen when these two get together....
We met up with Erica and went through to the PT area and discussed what he had been doing before the op and in the couple of sessions since. She decided to put him on the treadmill. I looked at Loup and she gave me the look that I suspect was on my face also ~ was she looking at the notes for the right kid ? the one who was only a day out of hospital and who we were handling like a china doll. But no, up he got. He looked a bit unsure at the start but soon got into it, and wanted to go faster and faster. He did 5 minutes which Erica said was really good as usually they only did a couple of minutes to start with. He was even getting a bit giddy, but had this big smile on his face throughout.
After the treadmill (or dreadmill, of course - wipeout fans will understand why) Erica said he could go onto his walker into the next room (more incredulous looks between us....). He was a bit wobbly and he had clearly lost a bit of strength but his feet were so incredibly flat. As opposed to the "Fred Flintstone" method of propelling himself.
The "Total Gym" was next (which of course we had to rename "Total Wipeout Gym") and he did some leg pushes and he had some great control. By this time, we had silly grins on our faces. Next up, was some stand to sitting and he pushed things again. Wanting to do 100 seconds rather than the target of 60. He also did some sitting with his back just off the chair-back (building up stomach muscles) and did a real good couple of bouts of this. Erica seemed most pleased and we just stood there looking like 3 years olds who had just had a dollar bill pulled out of their ear. Ev was clearly shattered but had done so well. So proud.
Tomorrow's session is with "Mad Mike" (SDR families will know all about him) - not sure what will happen when these two get together....
Tuesday 1 February 2011
"Home" - Day Eleven - Tuesday 1st Feb
It is only 12:30 here but, for me, this has been the most nerve racking day yet. Even more so than getting here, having the op and all of the stuff which took place afterwards. Lynda had been at the hospital overnight but Maya & Sam woke me at 5am. Which wasnt a massive problem as I wanted to get to the hospital in time for Ev's PT (Physio Therapy) session at 8:30 prior to his discharge from the hospital.
However, the weather is really weird (see yesterday's blog) and the snow was starting to settle on the ice. So it was pretty treacherous. The shuttle bus got me to the hospital in time. John, the "patient security" chap (hence the gun) welcomed me with "hey, it's 8:23 - glad you made it". Then asked me to explain what a fortnight is. Think the brits are taking over...
I got to the hospital room just as Loup was loading him into the wheelchair. He is really sore and uncomfortable and transferring him to his chair hurts the most. The PTs have shown us what to do but then it's in your hands. They say we cant do too much damage but when you lift him and he cries out in agony, that's not a good feeling for a Mum or Dad to experience.
His PT session went well and he played a couple of basketball games and he worked really hard. They seem happy enough with his progress and he is probably tougher than we think. So, it was back up to the ward to get discharged. I felt sick. We had only been in room 12E1 for a couple of days but it felt just the same as when we first took Ev home from Airedale SCBU - could we really be trusted to look after him. All on our own ? Apparently so.... We got him some valium to take the edge off the ride home (no leftovers, unfortunately). All the way, it was snow and ice and at every turn there was a chance of sliding off the road it seemed, which in itself would be bad enough but with this particular special cargo was a nightmare trip. Even though it was less than 10 minutes. However, Carlton got us "home" safe and sound and no-one has ever earned a tip as much as he did.
That was two hours ago and Ev is safely tucked up in bed, playing on his DS. The valium has worn off and he seems chipper enough. I just asked how he was feeling and the answer was "happy" and his body is feeling "ok". The weather might well curtail our PT tomorrow but that might be a blessing in disguise. Im sure he is up for it, but we are probably less so (at the moment) - mainly because of the snow and how uncertain it makes you when you are simply popping to the shops. Never mind this particularly precious and delicate cargo.
We know from speaking to other families that the recovery rate is phenomenal once they get going so hopefully we will all be a little bit tougher tomorrow....
It's snowing cats'n'dogs
First up, a lesson in weather systems. St Louis (and I guess surrounding areas in the US) has this thing called the "ice storm" which is basically when it's raining and, at the same time, it gets so cold that the rain settles as ice. So bad, that ice forms in the tree-tops, weighs them down and they topple over onto power cables and pulls them out. Then, it snows on top of the ice. http://en.wikipedia.org/wiki/Ice_storm
One of these is due. In fact, it's the worst one expected in 15/20 years. It is completely bizarre as the hospital was emptying and the hotel was filling up with people "battening down the hatches" ~ all while it was actually bucketing down. In the UK, there would be no chance of snow when it was raining, here it is the opposite and everyone is kinda concerned. Not entirely sure what will happen in the next couple of days.
In other non-cataclysmic weather event related news, Ev continued to return to normal and had a couple of physio sessions. He still seems so, so tired and it really takes it out of him but he is driven (obsessed) by building a wipeout zone in the therapy unit on his last full day. He's due to be discharged tomorrow which means we will, all too briefly, be together. Another step. Here is a photo of him multi-tasking; eating, half-sleeping and thinking about wipeout.
For me, I was able to spend a bit more quality time with Maya & Sam. We went ice-skating in the morning (yeah, I know, but Maya was so keen to go and we had promised her). For some reason, (out of season, mid-week and it raining ice....) we had the rink to ourselves. You should have seen the look on the face of the guy who served us - total shock that someone had actually tipped up. Sam loved falling over and Maya went around the edge a couple of times before letting go on the last run. Then, in the afternoon, we met up with Ben & Amelia W for a swim before going down to the "social". There was myself, Maya, Sam, Grandma Skipton, Grandad Skipton, The Wardleworths (6 of) (think Sam found a kindred spirit in Ben W) and The Rashbrooks (3 of) all collected in the corner. As seems to be the case with SDR families staying at the Residence. Missed Loup and Ev, but maybe tomorrow... Unfortunately, jet-lag was still winning so Maya wanted to go "home".
So far, I have pretty much known what to expect the next day from updates of those we have followed ~ but ice rain was never on Facebook.... *dislike*
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