Thursday, 28 November 2013

Hip, Hip Hooray!!

OK.... it's a really naff title I know, but this week we had some good news with regards to Daniel's hips!

On Monday we had our appointment at the Joint Orthopaedic Clinic, basically a hospital appointment with the orthopaedic surgeon, paediatrician and a physiotherapist all at once. The main purpose was to review Daniel's latest hip x-ray. Daniel has had regular hip x-rays (every 6 - 12 months) since he was two years old, because children with CP are at high risk of dislocated hips. The reason for that is a combination of the spasticity (tightness) in their adductor (inner thigh) muscles, constantly pulling the head of the femur outwards, and the lack of normal weight-bearing, which means their hip sockets stay very shallow.  Once a hip reaches about 45% subluxed it is impossible to bring it back in without major hip surgery, where the pelvis is 'carved out' and the hip pinned in place, and that is of course something we very much would like to avoid!

Just so you can see what I am talking about, the image below shows an x-ray of an almost dislocated hip in a 5 year old child with cerebral palsy. NOTE - this is not Daniel's x-ray, just an example!

Daniel's last x-ray, done in May, showed that his left hip had reached 29% migrated, and we were concerned that although the SDR operation had removed the spasticity, and therefore stopped the pull from his adductors, it had also loosened all the muscles, including the ones holding the hip in place, thereby making the situation temporarily worse. Over the last six months we have worked hard at building strength in those muscles surrounding the hips, as well as monitoring Daniel's sitting and lying positions, to ensure the head of the femur is always encouraged inwards, and not out. Of course, since he is walking lots in his walker, he is also weight-bearing far more of the time than previously, which helps considerably. We were hoping to slow down or halt the migration before it went much further, but we were not sure how realistic a hope that was.

So... we had the next x-ray done in half term and had been anxiously waiting for this clinic to find out the results, which were better than we had even hoped for! Daniel's left hip has started to come back in again, and is now only 19% subluxed - a huge improvement! His right hip is also fine, at only 10% migrated! All in all, really brilliant news! In addition, since Daniel is weight-bearing so much more now, and building strength, the orthoapaedic surgeon predicted that Daniel's hips might now continue to behave themselves, and hopefully will not require intervention. That's an absolutely massive relief.

The team were also very happy with Daniel's progress since the op, and his weight gain (although since Rich and I still have to lift Daniel several times a day then we could have told them he was heavier!) All in all, it was an unusually enjoyable hospital appointment!

Of course, as soon as you stop worrying about one thing (for now at least), something else just moves to the top of your 'worry list'. Now we are worrying about the hyper-extension in Daniel's knees when he walks! But I will save that for a discussion another day....

In other news, last week we had a really productive joint visit of Daniel's private and NHS physios, Jenny and Janet. They were trying him with a therasuit, which is a suit (which Daniel would wear under his clothes) to give support and 'proprioceptive feedback', indicating where bits of his body should be in space. The idea would be to help him walk with his hips straighter, since he still tends to leave his right hip behind and rotate as he walks. The results were a bit inconclusive at this point, so they and we are still considering what is best to do, but it was so useful to have the two physios together and to discuss several other little things at the same time.

Here he is, trying on the therasuit (it's flesh-coloured, so you have to look carefully!)

And then (with his clothes over the suit) seeing how it affected his walking with his sticks....

And finally..... I thought you might like to see Daniel's new super-cool registration plate!  (Shipped over from the US, with thanks to Grandma, Grandpa, Chris and Diana!)

Friday, 15 November 2013

One year ago.......

This day, one year ago, we put Daniel into the hands of Dr Park. We hoped and prayed we were doing the right thing and it would give Daniel a brighter, more comfortable and more independent future. The few days that followed were traumatic for us all, and the twelve months that followed that could be aptly described by the words 'roller coaster'! It has been harder work than we ever imagined (and we knew it would be hard work!) However, there can be no doubt that Daniel has made huge progress and today is a good chance to look back and celebrate that, forgetting the things that worry us on a daily basis.

We are incredibly grateful for the huge number of people who have supported Daniel, and us as a family. From those (some of whom were strangers) who threw themselves into our fundraising, the fabulous team in St Louis, our physiotherapists here in Cheltenham (both private and NHS), Mike Poole and his team in Scotland, Daniel's wonderful teaching assistants who enable him to succeed every day at school, and finally our families and close friends (some of whom we met in St Louis) who have provided a wealth of practical and emotional support.

At the centre of all that is one special little boy, who is just bursting with enthusiasm for life. Happy first SDR anniversary to Daniel, and to his friends Brooke and Glen.

This link is to our new video, which celebrates the progress Daniel has made so far. (Press play then double click to make it full screen).  Enjoy!