A year ago Reuben started his treatment of serial fixed spinal casting to help prevent the progression of his scoliosis. He has 2 curves and a rotation to his spine and the casting is primarily to stop the condition getting any worse, and if during the course of treatment we see an improvement then it's a bonus!
We were told that he would have 2 years of casting so providing we have no setbacks (chicken pox or the like!) then that's just 12 months to go. As the year goes by we will have an indication what the treatment will be after this time, whether they will continue to use fixed casting or removable braces which can be removed for 1 hour every day for bathing.
In my head I thought it would get easier, I thought Reuben would get used to it and everything would be easier but we are getting to that point of complete exhaustion wondering whether we can actually go another 12 months. It's tough, Reuben still continues to wake in the night, usually every hour for turning, rubbing his legs from cramp or giving him medication or making him comfortable which we don't mind at all, he's our precious son and we would do anything for him but it is having an impact on day to day things - my brain just can't process things any more due to sleep deprivation, it's difficult sometimes to even construct a sentence and my memory is awful, I am struggling to remember the names of even familiar everyday things like a toaster or the way to the shops I am hoping my memory returns when we can sleep again! So I hope you will be understanding that if we forget things or aren't very chatty sometimes that our brains just aren't working properly, please do bear with us! It's not all that bad really on the grand scheme of things, and it will all be worth it in the end!
Since writing my last post on here Reuben has started nursery! 2 days per week Reuben has been awarded a special needs government funded place at an outstanding nursery which are fantastic with him, they are very accommodating and work one-to-one with him. He's still settling in but I'm sure he will really love the sessions. He likes the outdoor area the best, he loves to be outside :)
Next week Reuben will see a new paediatrician who is going to assess whether he thinks he has autistic spectrum disorder, so we'll let you know what happens.
Reuben continues to have weekly sessions with his portage worker - she is helping him with concentration skills, using his hands properly and learning communication skills with the help of picture cards and association and he's progressing all the time. He still struggles to do independent things with his hands due to the neurological condition he has but he's trying!
Last week he saw Angela and Lydia his occupational therapists who came to visit and made sure that his equipment in the house was all the right size for him, and our health visitor popped in too on a different day - Reuben gets lots of visitors!
So here we go on the next 12 months, each one a step closer! The last 12 months have been a bit of a blur really, just one appointment to the next, from one hospital room to another but I think this year it will be a bit less high paced and we will have some time to enjoy him being 2 and doing all the wonderful things that 2 year olds do!
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