Tuesday, 11 December 2012

Monday...a brilliant day!

I am not sure where to start with describing today - it has just been a wonderful day!

We had to be up bright and early for our post-op follow up with Dr Park. We found ourselves a bit nervous about this, because he hadn't seen Daniel since he was discharged from hospital and we obviously wanted him to be pleased with Daniel's progress. Daniel also put on his 'Know pain, Know gain' t-shirt, especially for Dr Park! He watched Daniel walk in his walker....

Then he sat him on the sofa, inspected his scar and watched him move his feet. He talked about some exercises we can do to help with Daniel's arms. He was happy to reinforce the prognosis he had made for Daniel before the operation. He believes that in a few months to a year Daniel will be independent in his walker. He is also confident that - in a couple of years and with a lot of hard work and physio -  Daniel will walk with crutches in all environments (the 'in all environments' is relevant because walking outside on bumpy ground is much harder than walking indoors). Further to that, it is also possible that Daniel may ultimately walk around his own home unaided. The whole thing has such an air of unreality about it, when you consider that the prognosis for Daniel had he not had this operation would be that he would not walk at all, and would be a full time wheelchair user all his life. It was difficult to know what to say to this man, who is so passionate about children with CP, and who has changed so many lives. Somehow the 'Thank you' and 'See you in a year' that we came up with was simply not enough.

We came out of the appointment with big smiles, and determined that Daniel will do the thing that Dr Park says is the key to success above all else, namely to 'walk, walk, walk' everywhere. We then went straight to therapy with Mad Mike (our last session with him, although we still have three more with Jackie to come). The big achievement of the session was that Daniel managed to stand himself up off the seat of the walker for the first time (but we didn't manage to catch that in a photo!)

He also did some good work on 'The Rocket' (total gym), although he is still a bit scared to straighten his legs after the hamstring surgery last week.

He did a bit of stepping down out of his wheelchair.....

Then he went for a walk....

We went back to the hotel for some chilling out and playing. Then had a nice 'FaceTime' with Grandma and Grandpa to wish Grandpa a Happy Birthday. We did Daniel's exercises and then ventured out in the corridor with the walker. Daniel had been quite tired and sleepy during the exercises and we had been regretting leaving them until so late in the day so we didn't have particularly high aspirations for the walk. However, with quite a lot of effort, Daniel stood himself up in the walker, waited for us to fold up the seat for him, and off he went! You may remember that two days ago, when he walked for the first time in his walker, he walked about six metres to the laundry room. Today he set off, walked past the laundry room, and kept on going, and going, and going, nearly all the way to the end of the corridor, which took around 25 minutes and was a distance of over 50 metres!! He did not have a sitting down break at all. We simply couldn't believe it!

Flushed with success we went down to the social evening downstairs and joined tables with our friends the Lawrance family. Daniel's friend Brooke had her SDR op straight after his, and her heelcords op straight after he had his hamstrings lengthened. The two of them have been through so much in the last four weeks, and it was just fantastic to see them laughing and having fun together. Brooke's family had also had an extremely positive follow up appointment with Dr Park today, and we all felt like celebrating!

Lucy also had fun with her partners in crime, Brooke's sisters Nadine and Neve, with whom she has spent happy hours in the siblings' playroom at the hospital. In fact the three of them all insisted on sitting on one chair together!

After the meal the children all played hide and seek, and other games, and we also had chance to catch up with a couple of the other SDR families.  It was just wonderful to feel so relaxed, and was the first time we had actually been properly 'social' at the 'social evening'! We are looking forward to more of the same tomorrow and Wednesday nights, but there's more hard work to fit into tomorrow first!

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