Update: We’re nearly 6 months post diagnosis so I thought I’d share with you guys just where we’re at with everything.
Firstly Zach still hasn’t started his steroids yet which I’m gutted about. He was prescribed tablets and he’d of had to take 6 a day (what 6 year old will do that?!) I tried to get him to take them with no luck, so we’re now waiting for a liquid version to arrive.
His leg splints are still going great, he wears them with no fuss every night and we’re actually off to Orthotics later to see about measuring him for his next ones.
His ankles/feet are turning in on themselves, due to balance issues and his constant tiptoe walking. His hamstrings are becoming extremely tight too. To tackle this we do daily physio, morning and night (then twice a week at school.) He also wears special insoles to prevent the tiptoe walking when we’re out and about.
His heart and lungs are still great which is always good to know, even though they’re generally the last muscles truly affected some boys do have problems early on.
He’ll also be starting some 1 on 1 swimming lessons very soon. Unfortunately I’m having no luck with getting him any hydrotherapy just yet, but weekly swimming will do wonders for him until then.
Our lives are still a whirlwind of appointments but he copes so well, he never seems bothered by anything, he’s such a happy boy.
Most of the time I hold it together. There’s still a deep sadness when I think about his future, but I cry less than I used to. I throw myself into enriching his life and all our fun keeps me distracted and his happiness reflects in me.
Keeping the hope alive, making memories, love beyond words