Saturday, 19 April 2014

Sad to say goodbye........ again!

So, here we are, packing again tonight and saying goodbye to this special place. None of us want to leave, and it feels much too soon, but at least we feel it has been well worth coming all this way.

We did manage a trip on the paddle steamer the day after our aborted attempt! It gave some magnificent views of the Arch from the Mississippi, and it was interesting to see the collossal scale of the freight they move up and down the river.

Since the men are now thoroughly into the baseball, we went down to the new Ball Park Village at the Cardinals' Stadium. We had lunch, while watching the Cardinals play live on the big screen (they were playing away, so not in the stadium right next door), and the atmosphere was great.


Apart from that,  we have had final trips to the Zoo and the Science Museum, and our last couple of days have flown by.

From the physio point of view, in addition to his walking forwards and backwards on the treadmill, Daniel has also now been walking sideways (which works his abductors hard and is something we need to start doing at home).

He has continued to work lots on core stability. This photo shows him throwing toys into a net while in high kneeling, having to maintain his balance as he throws.

Similarly, work on the ball to build core strength.....

And riding the bike as a reward (although that of course also works his hips at the same time).

We now have our new set of home exercises, which focus particularly on hips and core and we are looking forward to getting our teeth into that when we get home. We were keen that this trip should be a 'reset', since our home physio had become a little unfocused, so we are planning a new weekly routine when we get home. Admittedly it may take us a few days to get that started (indeed even to decide exactly what form it will take!) At least we feel like we know what must be done, and we just need to work out how (or mainly when) we are going to do it!

Daniel's new pair of blue crutches also arrived today (in the nick of time) and are safely packed! It will take him a while to start to use them, little by little, but we will see how he gets on at home.

So, it was with great sadness (and even a couple of tears) that we said good bye to Jackie....

...... and Mad Mike (with Kelsey the student, who worked with Daniel too today).

Lucy also said a very fond farewell to the Siblings' Playroom, especially her favourite member of staff, Pat!

So, goodbye St Louis and thank you once again. Admittedly we leave with one new thing to worry about (the twisting in Daniel's leg), but also with new purpose and determination. We all wish we could stay longer, although I am looking forward to reintroducing vegetables into our diet!

As a final summary,  I thought I would post this photo. This room in our apartment was the place where in those initial weeks after surgery Daniel needed the support of both of us to bear weight and walk the length of the sofa in his walker. Sixteen months on, here he is standing independently in front of that same sofa waving his hands in the air! We need to remember that and continue to focus on the progress when we get home and struggle once again to fit the new exercises into our daily lives!

Wednesday, 16 April 2014

Sixteen months of excellent progress, but mixed emotions.......

We have so far had four physio sessions, two each with Jackie and Mad Mike. We have now established that unfortunately Daniel does have some tibial rotation in his right leg (ie warping of the bone below his knee). It is fairly minor at the moment (and is unfortunately an issue for many children with cp due to their abnormal gait) but we need to take action rapidly as it is something that could ultimately require surgery if it continues to get worse and worse. The root cause is the weakness in Daniel's hips. Therefore when he walks, his right leg does not come all the way through and his foot is put down at an angle out to the side; his knee then tries to point forwards and inwards to compensate, and this causes the twist.

During Friday's sessions, Mad Mike taped Daniel's hamstrings to try to discourage the hyper-extension in his knees (the blue tape you may see in the photos below) and also experimented with 'derotational strapping' on Daniel's right leg, which is designed to discourage the twisting motion I described above.

However, it's a case of trial and error in seeing whether the strapping works, and you can see in the tiny video clip below a time when it was not working, and his leg was still twisting (look at the angle between where his foot is pointing and where his knee is pointing!)

We also experimented more with the strapping over the weekend, and must admit to being a bit undecided about the way forward with it. At the moment we feel we just need to live with the issue, while working extremely hard at the hip and core strengthening exercises to try to tackle the problem at its root. This gave us quite a miserable weekend because there are times when we want to wince, watching Daniel's foot position as he walks, and it is extremely hard to resign ourselves to the fact that whatever we do Daniel will have some problems with joints etc as he grows older.  Don't take this to mean that we have regrets about Daniel's SDR - he would have had significant problems with hips, joints, contractures etc if he had not had SDR. He is undoubtedly better off, even without considering his transformation in mobility. It is just hard to accept that we can't 'fix' everything and he will never have a normal gait, even in his walker, which will have certain impacts over time. We have also realised that we can't just nag Daniel all the time as (a) it doesn't seem to make him walk any better when we do, and (b) it just takes away all the pleasure he gets from walking, and makes him feel like he is failing. However we can, and will work hard at strengthening the relevant muscles to try and improve some of his issues.

In the physio sessions he has also had a few tries walking with crutches, supported a little, as you can see...

He has also done some treadmill walking, both forwards.....

.....and backwards (which is really hard for him, so it had to be on its very slowest setting).

He has done some lovely standing balancing, for over a minute at a time..

and also some supported standing on one leg (again this requires him to stabilise his hip).

Daniel has really enjoyed his physio sessions, and the communication between the physios is so good that each one always manages to pick up where the other left off.

As when we were here before we have been so impressed with the hospital, the facilities, cleanliness and exceptionally professional and caring approach shown by all the staff. Lucy has been thrilled to return to the siblings' playroom, the free, secure childcare facility for siblings, while Daniel has been in physio. On Thursday they were celebrating National Siblings Day, and made superhero capes and masks, as well as having all sorts of special events and giving each child a goody bag to take home.

When not at the hospital, we have enjoyed returning to some old favourites, including the Zoo, Science Centre and Arch.

 Also lots of swimming in the hotel pool.

We have experienced some classic St Louis weather swings, from baking in 26 degrees at the zoo on Saturday, to electric storms on Sunday, and then plummeting temperatures and freezing rain on Monday!

Rich and both children have become seduced by the baseball, and officially become 'Cards' (fans of the St Louis Cardinals, a major league baseball team). Daniel has purchased and proudly showed off his Cardinals t-shirt and cap....

.. and here are the three of them watching the baseball on tv while waiting for lunch in a traditional American bar today!

Oh yes, and Rich managed to get a parking ticket! Admittedly he didn't understand what the signs meant (although perhaps with hindsight the 'P' with a line through it could have been a clue) but ignorance of the law is no excuse, eh?  It's now paid though, and we move on, with a fuller understanding of the American Highway Code!

We were hoping to go on the paddle steamer up the Mississippi today, but the area around the Arch is being hugely redeveloped in preparation for celebrations of it being 50 years since the Arch was built. So this is a very common sight...

The upshot of this building work was that, in order to avoid a totally wheelchair inaccessible 40 or so steps down from the Arch to the Riverside, we had to walk a huge (around a mile) detour to gain access to the river. By this time, perhaps unsurprisingly, we had missed the boat, and were all (most particularly me) in a foul mood! We will try again tomorrow or the next day though, since when we were last here for Daniel's op it was winter and the boats weren't running, so it would be a new experience.

So, all in all, it's been a busy few days, and we have been reminded just how much we like St Louis, on top of the special place it will always have in our hearts. From the physio point of view, we came knowing that we needed the 'reset' and are still hopeful that we will leave with a clearer idea of the way forwards, much as it is causing us some sadness and confusion along the way. Plus of course, it is important not to forget and to celebrate just how much progress Daniel has already made.

The quote in this photo below (taken in the museum underneath the Arch) is a very famous excerpt from the Declaration of Independence. However, the words also seem very relevant for Daniel, and are important for us not to forget.

Thursday, 10 April 2014

Back to St Louis!

Well, here we are back in St Louis, and all very happy to be here, in this place that has been so pivotal in our lives.

We had a lovely couple of days in New York on the way, with Chris and Diana,  having a much needed break before getting down to physio and all things related. We managed to pack in a surprising amount, considering the shocking jetlag that hit us all. Please forgive the slight indulgence of a few photos that are not directly related to Daniel's progress (which is what this blog is meant to be about!)

On day 1 we did ......Times Square....

...Top of the Rockefeller Tower, with its fabulous views...

...  and a bit of shopping!

On Day 2 we separated into two groups. Diana, Lucy and I had a 'ladies day' at American Girl Place on 5th Avenue. This was a truly amazing experience, and truly American! Lucy bought her first (and probably only 'American Girl' doll) and we had a lot of fun taking it to lunch, and to the salon (Yes, you did read that correctly!) Lucy is thrilled to bits with 'Isla', as she has named her.

Meanwhile Daniel, Chris and Rich did more 'manly' activities, including Central Park and The Museum of Natural History. (If you have ever seen the film 'Night at The Musuem', it's that museum!)

Yesterday we flew down to St Louis, and received a warm welcome from David the taxi driver, who picked us up from the airport again, and all the staff at the hotel, who even indulged us by giving us the same room as last time! Today we got down to business, firstly with the physio assessment with Barrie. This was a repeat of the full assessment that was done the day before Daniel's SDR operation 16 months ago, and was again filmed, so a direct comparison can be made between his pre-op abilities and where he is now. Since Barrie also did our assessment on that day, back in November 2012, it was great to work with her again today.

We had a good discussion with her about the splints issue we have at the moment, ie the fact that he hyper-extends at the knee so much in short splints, which will cause damage to his knees. The new tall splints help greatly to reduce Daniel's hyper-extension, and he can stand independently for so much longer in them but they will weaken his calf nuscles, and his private physio does not like them at all. 

The only new concern arising from the assessment, and something that has been niggling away at us for a little while anyway when watching Daniel's foot turn out as he walks, was the possibility that Daniel may have some tibial rotation in his right leg (ie twisting of the bone). This could be a real problem in the long term (requiring major orthopaedic surgery) so if it does exist we need to try and tackle it straightaway. We will be able to find out more in the coming days.

Later in the day we had our consultation with the man we have come all this way to see, Dr Park, the neurosurgeon who did Daniel's SDR operation. He was very happy indeed with Daniel's progress, at several points saying "That is excellent". He continues to predict that Daniel will ultimately be able to walk with crutches in all enviroments. This will take practice over quite a while, but he would like Daniel to try crutches while here in St Louis to see how he gets on. Daniel said the best moment was Dr Park saying to him "You're doing great".

After the Dr Park appointment, we retrieved Lucy from the siblings' playroom, where she had been seriously happy to get back to play! We grabbed a late lunch in the hospital cafeteria and then went off to 'Safety Stop', a shop run by the hospital that sells carseats, cycle helmets and other related items for children. We were hoping to buy a carseat for Daniel. This is a great example of the sort of intractable problem that goes hand in hand with having a child with special needs, and is the sort of issue that parents of non-disabled children do not even need to consider. Most children Daniel's age would be sitting on a booster seat, using the normal car seat belt. However, Daniel's trunk and neck are still not strong enough to do this, and he needs a more supportive seat with a 5 point harness. In the UK the only such seats for a child of Daniel's size are the official 'special needs' seats, which cost several thousand pounds, and are huge, to the extent that they will not fit in my car. (The wheelchair adaptation means the rear seats are slightly moved outwards, restricting space in which a car seat can be placed). The problem of Daniel's car seat is sufficiently large that we may even be forced to change my car as a result (sounds ridiculous but it's true). We had found out when we were here in the US last time that 5 point harness seats go to a larger size / age of child here than in the UK and after a rather draining hour or so in the shop we found one which is slightly larger than Daniel's current one at home. Of course we couldn't try it in my car, but think from measurements that it may fit, and it should buy us six months to a year more time before we restart the same problem again. Whatever happens, we can use it here in the hire car (a super beast - see photo below!) and on the plane home. We are grateful for that and for the potential that it may do the job at home for a few months (at an absolute fraction of the cost of a special needs car seat at home).

Our lovely 'Dodge Grand Caravan' Hire Car
Tomorrow we start our physio sessions, every week day until we leave at the end of next week. The agreed aims at the moment are:
- to try crutches and see how he gets on.
- to look at all the areas where Daniel needs to work, and create a new home exercise programme for us to take away (like the original 'pink booklet' we had immediately post op').
- to ask the orthotist here to look at Daniel's short splints, to see if any small additions can be made (eg straps across the back) to try to lesson the hyper-extention in his knees when he walks wearing them.
- to ascertain whether Daniel does or does not have tibial rotation in his right leg, and devise a plan of action with regard to that.

 It is good to be back in St Louis; we need the 'reset' and it has started well. More in a few days....