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.

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