Living with Cerebral Palsy 🍋🍋

Thursday, 16 January 2014


12 months ago today, we took Elin to Alder Hey for an emergency EEG. Her body was in constant and fairly violent spasm. Absolutely terrifying. We feared she may be in 'status epilepticus'  (a constant seizure). Thankfully this was not the case, but were relief prevailed on discovery that her poor brain had not been seizing for an elongated time, so fear raised it's ugly head in learning about a new diagnosis, 'Dystonia'. We hadn't really heard about this before and incredibly, as luck would have it (for us, not for them) there was another Mummy on the ward alongside us with an eight year old boy with the very same diagnosis. I thank my lucky stars for that Mummy and the sanity she brought me with her reassurances in those first couple of days on the ward, as Elin writhed and struggled against herself. It was one of the worst things we have ever encountered and I hope never to see her in that state again. I learned to function in a constant state of terror, something I hadn't known since those first few horrendous weeks after Elin's birth. I didn't know if I would ever see Elin smile again. The 'expert' consultant was not positive and actually told us this could be 'it' for her now. We were heartbroken. Thankfully as you know the story ended well as Elin responded amazingly to the new medication and in 48 hours the spasming had ceased and she was smiling again. I have never felt relief like it. However, a new diagnosis took quite a while to get my head around. I honestly thought we had no more nasty surprises in store, that out medical journey of discovery was over with Elin following the diagnosis of Epilepsy some three years before. This was not to be though, and we researched and joined online forums and learned as much as we could about this confusing and frustrating new condition, (as well as trying to balance her meds over the coming months to reach a state of equilibrium).  Not the start to the new year we were hoping for. 2013 never really took off for me after that. Nothing like the shock of seeing your child like that to give you a firm slap around the face (and believe me you can still feel the sting six months later.) Definitely not my favourite year.
2014 is looking more promising already what with getting to January 16th with no hospital emergencies! I will take this as a good sign that 2014 will be a better year in general. Elin is still herself, still smiling, still gorgeous- something I would have cut my right arm off for this time last year. So once again I'm counting my lucky stars that fate is still shining favourably on our girl. She's a fighter alright.

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