Living with Cerebral Palsy 🍋🍋

Sunday, 13 September 2009

A Brief History of Our Universe......

So how did I get here?
Sometimes Im not sure. It all seems so unreal. But here I am and here I'll stay so I'll fill you in on the story.
Elin was conceived after successful IVF treatment (unbelievably and almost unheard-of first time success!) because I cannot have children naturally following fallopian tube surgery when I was younger. After a completely straightforward and healthy pregnancy she was born at 6:28 a.m on the 22nd July 2008. She did not cry, the midwife turned a nice shade of ashen and my husband was screamed at to 'pull the cord' to call the emergency crash team of doctors. In a nutshell this is what happened next.............
1 month on S.C.B.U...touch and go....brain scans, testing etc etc....then eventually home with a nasal feeding tube. Home for 2 weeks then back to children's ward for 3 weeks due to excessive vomiting and may I point out, excessive screaming (which turned out to be acid reflux and not, as the trainee Health Visitor had assured us it was, colic). Cerebral Palsy given as a diagnosis but apparently 'impossible to tell' the extent of the brain damage incurred at birth. Home again, more tests then off to Alder Hey at 4 months old for a fundoplication, vagotomy, gastrostomy and pyroplasty. 3 hours in surgery and all goes well. Elin more comfortable and stops vomiting. BUT this is where a Neurologist points out that Elin is not just twisting and having muscle spasms, she is fitting. She has West Syndrome- a form of epilepsy synonymous with her severity of brain damage which he describes as H.I.E grade 3 which I learn about from google later on ( I also learn not to look up anything on the internet again.) Neurologist lays out a very poor prognosis for Elin (think as bad as it gets in terms of brain damage and you're halfway there) and we go home for the holidays with a present of strong epilepsy drugs. Merry Bloody Christmas.
The months that follow consist of Elin having up too 100 fits a day and not developing any skills as far as we can tell. There are tears, depression, disbelief, anger and Paul and I digging deep into our psyche's to find something we didn't know we had- the strength to deal with this impossible fate that has been laid at our unwelcoming door. We do this with an incredible amount of help from friends, family and work colleagues. The sort of kindness that would restore your faith in humanity and for which we are eternally grateful. Fast Forward to Summer 2009-Elin's 1st birthday and things are better. Elin is a lot better, having found finally the right cocktail of drugs to control her fits. We are a lot better. I am even back at work, part time and feeling much more like 'me'. But neither of us are in denial about the road we have embarked upon with Elin and the difficulty of the journey ahead.

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