I’m Veronica Foale and I get a strange amount of pleasure from writing about my life on the Internet.
I live in Tasmania with my husband, Nathan and our three children, Amy – born September ’06, Isaac, born January ’09 and Evelyn, born July ’12.
I’m passionate about telling stories and having other people tell their stories to me. I think that people are interesting, even when they don’t know it. Everyone has a story to tell.
In April 09, I was diagnosed with Ehlers Danlos Syndrome (EDS) after years of worsening symptoms. Having EDS is not fun, but having a diagnosis now makes life a little easier. Most of my joints either sublux (partially dislocate) or dislocate fully at some stage. This is as painful as you would imagine it to be. I swear, a lot. Luckily having EDS doesn’t stop me writing or imagining things, just lifting heavy boxes, or twisting.
Amy and Isaac have also both been diagnosed with EDS, with Amy also having PDD-NOS and Isaac having Autism. We suspect that Evelyn also has EDS, after the premature rupture of my waters at 36ish weeks, as well as her allergic reaction to tape and serious bruising from an IV in the NICU.
Isaac has assorted other issues, namely issues with chewing and swallowing, as well as some pretty major digestive issues. He also has sensory processing issues, which can make feeding and dressing him interesting. We see lots of doctors and therapists, leaving very little time for the simple pleasures in life, like mud pies and ignoring the children while drinking a cup of tea.
In August, aged four weeks, Evelyn started to have what we thought were seizures. She spent a fair amount of time in and out of hospital before they sent us home to await the results of metabolic testing. The metabolic testing came back clear and for a while, the doctors were stumped. Evelyn’s neurologist reviewed the video of her seizing as well as her EEG results and decided that they probably weren’t epileptic seizures. What is her twitchiness? No one knows.
Further repeat testing showed that Evelyn had antibodies in her urine consistant with exposure to cytomegalovirus. When did she contract this? Again, no one knows. I was immune and therefore, she ought to have been safe from it in utero, but it’s not looking like that. (Cyto is similar to rubella, in that it doesn’t cause major issues in a healthy person, but in an unborn foetus, it’s all kinds of nasty.) Currently she has little to no limb control, her vision is sporadic and her hearing also appears to be sporadic. She still has non-epileptic seizures regularly, sleeps more than a baby her age should and is absolutely fucking adorablecute. She smiles, A LOT, rarely cries and is the absolute delight of all of us.
She’s now been called officially developmentally delayed, with some of her delays putting her at around the 3 month mark. She’s been referred through to a specialist Paediatric Physiotherapist for therapy and we’re currently waiting for our appointment in early April.
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