Today Reuben had his latest spinal surgery to lengthen the rods in his spine which are holding his spine straighter as he grows. He needs this surgery done every 6 months. The operation went really well, he is now home resting, very sore and a bit disorientated from the morphine and anaesthetic but he should be back to himself in a few days. Reuben needed the operation to insert the rods when he was 3, he was very young to have it done, usually it is done when children are a bit older and the surgeon mentioned today that he might out-grow the rods before he is ready to have the final fusion as a teenager, so what they might need to do is change the rods at a later date for a new magnetic rod which will not need the 6 monthly surgery to adjust, instead a quicker non-invasive adjustment done in out-patients. One step at a time though, we'll just wait and see how he does and see what happens.
We said goodbye to a lot of people over the summer who have been with us over the last 4 years, nurses, health visitors, speech therapy, nursery staff and everyone else involved in the pre-school team of wonderful amazing people who have worked so hard with Reuben and us to get him doing so well this far. Now it's time for a new adventure and a new team of people as he starts school in a few weeks! We have met the support worker for the school classroom who will be helping and we have already had several meetings to prepare for when Reuben attends to make sure that everything is in place for him and he will be safe and enjoy himself at school. His big sister Esther will be there with him and we are confident that he will really love being at school :)
A few weeks ago we met with the paediatrician who deals with Reuben's IBS and food intolerances, she's happy that we're managing so well to keep him stable following the diet that she has discharged us from her clinic at the hospital unless he has major problems again, and now he can just be followed up and kept an eye on at the local clinic to make sure that everything is going ok which is good news, that's one less clinic to attend!
A while ago we also saw the paediatrician who oversees Reuben's Autistic Spectrum Disorder, he monitors him regularly and we're really blessed to have such a fantastic doctor who absolutely understands Reuben and his difficulties and has really made sure that he has been getting the very best care from all the other departments like speech and language, physio etc.
Ok I think that's enough writing, here are a few photos from our summer :) xx
We had a holiday to Northumbria, Reuben enjoyed being on the beach, looking round the castles and day trips out and about!
Reuben and Esther on the big wheel - Reuben's favourite ride!
Reuben's first donkey ride!
Looking for monkeys at Chester zoo!
Just one more thing to remind myself really in case it's a phase but Reuben at the moment is absolutely the most loving adorable boy and I never want him to grow out of saying 'I love you Mum' to me every few minutes like he does at the moment, and 'I love ya too Dad!' in his very northern accent! He is full of cuddles and snuggles and wants to share them every minute of the day, even if it's 4am I don't mind, he comes and flings his arms round my neck gives me big squeezes and smiles and lots of I love yous - totally adorable and I hope I never get complacent or take them for granted because every time he says it it's beautiful, long may it last! :)
I've had the privilege of meeting this remarkable young man in the summer of 2015 and yes he's still a lovely, warm and loving little angel. Bless you Reuben x
ReplyDeleteI've had the privilege of meeting this remarkable young man in the summer of 2015 and yes he's still a lovely, warm and loving little angel. Bless you Reuben x
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