It’s nearly six months since I last posted and since we were last in hospital. Blogging seems to drop to the bottom if the list of things to do when we are home, but I have plenty of time here! We are back for just a week of top up physio, to stretch out the calves and strengthen the legs and core. During a block like this we can usually really see the differences, so here’s hoping! The regime has changed a bit here at hospital with a new school teacher who has more of a classroom environment at which parents are not invited so I have lots of time on my hands and Matthew is being kept busy. We haven’t seen the physios yet apart from at ward round but are due a measurement and assessment this afternoon so will see how it goes.
Photos to follow…
One of the unexpected benefits of coming to this hospital is that we have found a true peer group for Matthew. This week in our bay there are four boys aged between 7 and 12, all have spastic diplegia cerebral palsy, three have had SDR. This lunch time they are all long legged sitting with their gaitors on; they have all done their exercises together in the morning and evening, each Mum working though the specific ones for their child. The boys talk about their surgeries, what help they have in school, their friends, whether they like being in hospital or would prefer to be at school. All this helps Matthew enormously, there is no one in our local area with a similar type of CP so this helps normalise it for him, shows him he’s not the only one. No one has to explain anything, they all know what splints and gaitors are for and can compare the mm depth of the wedges in their shoes.
The older ones provide an opportunity to see what lies ahead so it’s not a surprise but mostly, as Matthew said last night, it’s just nice to be with people like me.
William has done his week here with Matthew and it’s my turn now. It’s very familiar and feels like we’ve never been away!
I have been a bit concerned that progress has not been as fast as I might have liked in these last few months, there have been massive improvements but he’s still
struggling to put his feet flat and his gait has been fairly appalling. However what I realised today is that he has grown a good two inches. William had mentioned this last week but I hadn’t taken it in until I saw his splints with fresh eyes, they appear to have shrunk! This could
very well explain why he’s found it hard, growth spurts area major problem with CP.
In spite of growth spurts I have been reminded how important the daily nagging is to making a difference. Today I saw Matthew do proper heel - toe walking for the very first time, only possible because he has been encouraged (nagged)over every step to go slowly and put his heels flat, a week of this has seen a noticeable improvement. How to keep his going slowly and carefully when his little brother wants to race is another matter!
Thomas and my Mum are staying in the local bed and breakfast we have found just around the corner for this week. I hope this means that Thomas will be able to feel more involved as he will be coming to eat in the evening and join in the evening’s entertainment, tonight they made puppets and put on a puppet show. The picture is of Matthew standing independently using both hands to put on his show - something he could not have achieved pre SDR.
Tummy lying after the hydrotherapy this afternoon. Works well as a rest. We have also had authotics visiting to look at the rubbing AFOs (splints). They will adjust them and bring them back later. It seems that Matthew has had a growth spurt which explains why a lot of things have been quite tough.
I had a good conversation about foot surgery regarding Mathews right foot. With so many bones in the foot, and the addition of SDR, foot surgery is such a gamble they don’t do it here unless there is lots of pain.
Matthew has created decorated exercise cards so he can pick as we go through. Some are clearly the ones he likes and some not.
The aim is to improve cooperation but the new exercises are tough and compliance is still in development.
Matthew has been settling back into the tougher routine today. We are getting new exercises to take away and our phisio in Surrey should /will change them around monthly. Matthew has been walking everywhere slowly, with sticks (video attached). Much bullying and step by step attention has been required.
Authotics should be round to look at his tight and painfully splints and he may be back in the orlau lab for another gait analysis.
On the was to swimming one of the phisios said he had lost a lot of core trunk strength since he was last here and it is quite obvious.
We are back in hospital for 2 weeks for physiotherapy and measurements to see how things have gone. Improvement happens over about 18 months after the operation but more at the beginning than later on.
I discovered a few more pointers for the phisio today while he was being measured up. It seems that if an area is week you should be looking for an exert size to help it out. Sounds obvious but we were just working through the sheet we were given.
Also the exercises are best changed once a month.
Anyway we are back for some hard work and a boost.
PS - If you don’t want to follow any more we won’t be offended.
I am already noticing changes to the way we live our life that are quite profound now that Matthew’s mobility is so improved. Yesterday I had to ‘pop to the shops’. I hate doing this usually as it has been impossible to manage Matthew in a supermarket environment, even if it is a mini one, without his wheelchair. He is too wobbly and will tire too easily or will bump into too many people or displays. I would normally leave him in the car at a distance that is usually just too far away for me to feel comfortable or lug the whole chair out, put him in it and resign myself to trying to push the wheelchair one handed while shopping. This would not only take ages but the wheelchair is heavy, both to lift in and out of the car and to wheel, it’s not as smooth as a pushchair, the millions of pounds of research that’s gone into them hasn’t made it to the NHS funded wheelchairs yet! Yesterday however, we were out and back in 15 minutes, he got himself in and out of the car without any help, he walked around the shop, using his sticks, in a manner appropriate to a 7 year old (!) and was independent of me. It was such a relief, such a normal experience. I am just beginning to realise the extent that this operation could change our lives!
Yesterday and today have been spent catching up with various professionals. Yesterday we went to see Becky, one of the private physios we have been working with, she did some lovely work with Matthew standing. It was so nice to see the change in his ability to stand and play hangman! Much more independent and stable.
Today we saw another Becky, our NHS physiotherapist, Matthew was less than co-operative this time but I think she got to see the major differences and hopefully got enough of an idea about where to go next. It was a bit of a challenge though!
We have been very lucky with all the physios we have and they have all spoken to the hospital physio Nicola and will be talking to each other over the next few weeks and months. This communication is so important and it’s so nice that they are all proactive in this and it’s not just down to me, as the only person who sees Matthew in all environments, to try and pass information around.
This afternoon, after physio, Matthew headed into school! He was a bit apprehensive to begin with but ‘luckily’ our arrival coincided with the end of lunch and when Matthew saw two of his best friends eating their pudding he was off a cross the dining hall and didn’t look back! They had a gentle afternoon of choosing and stories to celebrate the end of Sats and this half term and it was the perfect way for him to ease back in after a long six weeks away. I met up with some of the other Mum’s from his class for tea which eased me back into the class too and brought my diary of school events for the next half term up to date!
William and I opened a card addressed to us both and we’re blown away by the contents! Thank you all for such a generous gift, a spa day will be a lovely thing for the two of us to do together and regroup, I’ve been looking at the website, the place looks amazing!
We are very touched both by the thought and the long list of contributors. We are only trying to do the best for a little boy who has opened up our world and been a huge blessing.