Today marks the eighth hospital visit (plus opticians) this summer holiday for little William – I am now fed up with it, I can only imagine how William is feeling. (And little sister Phoebe who has also come to every appointment too)
It’s amazing what one email can do…. 3 months ago a simple message to our community physiotherapist informing her that W’s scores were low; I was desperately searching for how we could help him, other than drugs, I felt helpless. Whether she sensed this, or whether she’s just really ace at her job, but she had us seen within a couple of weeks and had us on an intensive physio 6 week course with one of their therapists.
What I hadn’t realised was firstly, that these options were available and secondly, that we can continue with this help inevitably.
A simple email from a mother pleading for some help led us to this…Let’s hope it really helps William now and in the future with every time the destruction of Duchenne takes away another part of his working body.
The weekly intensive physio, a repeat visit to Addenbrooke’s and a Community Paediatrician appointment were all to see if he has gained some strength from his negative North Star results 3 months ago.
Is he coping with daily steroids? Are they having an effect, positive or negative?
Has the intensive physio worked? What else can we do???
To be honest I’m now a little weary of it all. I can see there being lots more beneficial physio added to his weekly routines & loads more drugs and supplements to give him at breakfast & bedtime.
In my pure little innocent 6 year old boy.
The going to and from hospital, even when just an hours appointment, is draining. I know this is our life and our future will never change, but I’ve kinda had enough for now.
We had an amazing family holiday to Turkey – total bliss – but the effects of that relaxing have worn off already: I’m tired and quite emotional. So, so much always going on due to duchenne which leaves less time to enjoy other aspects of our life and I sometimes feel like we’re cramming it in.
I’m not complaining about the enjoyment and fun we have, but I’m not bionic woman, I’m only human.
I really do wish we had a more normal life and I had those normal worries, routines and lives that normal mums have.
I will keep fighting for our boy, keeping that smile on his face no matter how tired I get and how draining I find it all. Because, what else can I do?