Tuesday, 13 November 2012

Monday - our first meeting with Dr Park!

Today we made our way to The St Louis Children's Hospital for the first time. Once again, we had a slight feeling of unreality, seeing the entrance that we had seen in so many photos! We had time for a quick snap but really wanted to get inside quickly because the weather could not have been more different from over the weekend - today was barely above freezing and with quite a significant wind chill. We had been warned that St Louis can have temperature swings of up to 20 degrees in a day, and we certainly experienced that first hand!

We were quite early for our appointment (those that know us well will find that hard to believe, but it's true), and Daniel spent ages in the lobby fixated with an 'audio-kinetic sculpture', which has balls going round and round a complex structure and making sounds. He absolutely loved it, and is saying he is going to go and see it every time we go to the hospital.

We went up to the Neurosurgery department and had a string of appointments, starting with watching a rather brutal video, which outlined the surgery, including all the risks involved, plus some statistics. Once we had got past that though everyone we met was really lovely, and all talked a lot to Daniel, not simply to us. Of course the highlight was meeting Dr Park, the man himself. Daniel was keen to show him what he could do, and Dr Park was very confident in his prediction that the surgery should help Daniel significantly, completely removing the spasticity in his legs. He also reiterated his original prognosis that in a couple of years Daniel should be walking with crutches, and that he should start walking short distances with a frame within 2 weeks of surgery. We were so thrilled at this, and of course greatly reassured by the fact that he still believed this having now met Daniel in clinic (there was always a bit of worry  that since the original assessment was done by video that things would change when he actually saw Daniel in person).

The only downside of the morning was that they do believe that Daniel will need the second operation to have his hamstrings lengthened, which has been provisionally scheduled for early December. We were hoping to avoid that, but were realistic about the fact that the vast majority of children of Daniel's age would need their hamstrings and / or heelcords lengthening, due to the contractures (muscles shortening) caused by 6 years of spasticity. Children who have SDR done at a younger age, eg 2 or 3, are often able to avoid the second procedure because the damage has not yet been done, but it is usually needed for older children if they are to get the best results from the SDR op. Anyway, at the moment we can't think beyond the first (and main) operation on Thursday, so we will worry about the hamstrings later.

We finally got to the end of all our appointments after 2pm, and took Daniel to the hospital cafe for lunch (the cafe is absolutely amazing, as hospital cafes go, but I will write more about that another day). We had some quality junk food (it's amazing how much of that we have had already, and we have only been here a few days!)

After lunch we phoned for the hotel shuttle bus to come and collect us, and by the time it arrived both Sophia and family, and Susanna and family had also arrived in the hospital lobby, after their daily physio session. That meant the shuttle had to accommodate 10 people, plus 3 wheelchairs and a walker, which was a bit of a squeeze, but we managed it, and it was nice to catch up with them on the way back.

Back at the hotel we collapsed with a cuppa, and heard all about Lucy's lovely day with Grandma and Grandpa. They had done a bit of school work (in case anyone from school reads this!) and had then gone down to the famous Gateway Arch and the museum, as well as having a walk along the banks o the mighty Mississippi. Lucy was full of her exploits and saying she wants to take Daniel there really soon.

Tomorrow we have a day off (we're planning shopping!) before the main physio pre-op assessment on Wednesday.

Thank you so much for all the messages on here and the Facebook page. It means a great deal to us that people are thinking about Daniel and supporting him and us all.

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