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....

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