So we are now into set 3 of William’s steroids (He’s 10 days on 10 off – thick pen on the calendar is a must) and it’s safe to say I think we made the right decision. That is me and Matt, no doctors really make a decision for you, you have to have it all on your shoulders as parents; research and make the BiG decisions about your son’s life!
So steroids means some changes to life too – cull the ‘junk food’ – I just changed the contents of their snack draw, simple, they’ve accepted it. Now, when they have treats it really is a treat and is very rare – much better for us all.
So has it been worth it? With all the worry of ‘not growing’, ‘weight gain’, ‘adverse effects’, I can say that after our 4th trip to the GP in 2 months – have to go twice a month for first 3 months to monitor his height, weight, urine and Bp – he has grown 2 cm, lost weight, Bp fine and urine normal! We must be doing something right. 😊 Oh and his face hasn’t puffed out either!!
He’s by the ducks having a big treat (croissant) in the sun with his sister before another positive GP appointment!
Oh and he has been to the Opticians – again due to steroids – we have to keep an eye on possible cataracts! And AGAIN all good there, 20/20 vision and healthy eyes. Yearly check ups from now on. Certainly was fun and games with a child who still doesn’t know his alphabet but a very patient optician and 45mins later we got there!
Steroids have not only given him a bit more energy – he’s playing after school rather than sitting on the couch! They’ve also meant his concentration levels have improved dramatically at school – now the afternoons aren’t so hard for the teachers. Positives again.
Don’t think I’ve written a post with so many positives (in a round about duchenne way)!
So, steroids have helped with school, but the fact that his EHCP has been approved AND he has full time support as of April 2018 has given me the biggest sense of relief. He now has the opportunity, duchenne or not, to reach his full potential at school: I cannot tell you what this means to a mummy like me with so many other things to worry about.
Not only did we start steroids, but we also had the delivery of his first wheelchair. Not something I want in his life, but something we need for those long days out. He had his first spin with all the family (3 uncles, 2 aunts, 3 cousins, granny, gramps, Phoebe, mummy and daddy) at Easter in Norfolk. Well, what was I worried about? He took it in his stride and it meant he could get to the fun fair quicker!! Everyone was great saying how fab his spider wheels were etc: you’d never know it ripped my heart out.
With so much going on in my little boys life over the past two months I forget the rest of life that’s passing by. My daughter is growing up to be an amazing (tall) little girl with such intellect and pure stubbornness. So proud of her and all she also goes through on the sidelines of this all.
Since the launch of DWAD we’ve had so much support and love. This isn’t something that stops once we have built our house, this continues for ever in our boys life. The cost of being disabled is like a wedding every time you shop – add a couple of £00’s! Did I tell you that his first ‘bike/trike’ rrps at £2,200! Anyway, ours & friends fundraising efforts are in full swing! We’ve had pancake days, coffee and cake, raffles, basketball mascot fun, mum’s night in, t-shirts/running tops for sale … and on 28th April I’m hosting a Dinner & Auction at an amazing restaurant in London for over 80 people – eeek. Fingers crossed it all goes well – I’ll update you in my next blog!
So life with a duchenne child definitely has its ups and downs but I’m grateful to say this latest post gives you and me many of our ups. Let’s hope I’ve not jinxed it now!
Let’s keep fighting the fight to give boys like mine a better chance and a better life.