Strange Week 28th June 2011

Strange Week 28^th June 2011

As the title suggests it has been a bit of a strange week, where Robbie seems to be struggling a bit more than usual. He seems to be suffering with pain in his shoulders, back and legs and has also been very moody.

Currently for pain relief we are a bit limited (usually Calpol and hot baths) these seem to soothe the symptoms albeit very slightly.

Sometimes you ask yourself, is it just because we are getting nearer the time for the next visit to Evelina that his symptoms seem worse, or is it, as both my Wife and I believe, genuinely getting worse.

Parents with children with Dystonia will associate with the feeling of helplessness that is felt when their children complain of the pain they are feeling, and the lack of assistance you can give your child, luckily for us Robbie is only six, and a close cuddle from Mum or Dad still help to soothe him immensely.

Went to the school today with the literature we received from the Evelina on our visit at the start of last week, the idea was that Robbie’s classroom assistant, teacher and head teacher could have a read over and jot down any questions they may have in relation to Robbie’s school requirements post op…. as these are raised we will speak to the team at the Evelina and gather answers to any queries they may have. In a similar fashion we are composing an ever growing list of questions to ask the team when we go down late July which we would like answers on… Probably the one at the front of my mind just now is will he be able to stop taking all these tablets every day?

The clock seems to be slowing down the closer we get to these appointments, I take it this may well be a mixture of just wanting this to happen sooner rather than later, along with that bit of fear of the unknown on how successful the Op will be.

At this stage I need to say a huge “Thank You” to the kind parents of other children who have had this surgery and taken the time to show their support and encouragement. There really are some amazing success stories out there, trust me these words of experience are making this journey so much easier to deal with… I thank all of you… You know who you are.

Luckily for us we have a little holiday between the 8^th – 15^th July, before we head back down,  when hopefully we will be distracted from what lies ahead of us… This is going to be the best holiday ever… As Robbie says “Only 10 sleeps till we go” J