Posts Tagged "special needs"

Why I love my half-brained baby

Posted on Dec 1, 2014 | 6 comments

Why I love my half-brained baby

Praise be all parents who lovingly pack a hospital bag for their child knowing they will be wheeled into surgery the next day. On Sunday night, I packed up my daughter’s clothes and nappies and all the essentials — plus her Minnie Mouse pillow and treasured, baby blanket — for her hip surgery the following day. Finally, I packed her favourite toy, a monkey music toy. On the bottom, I wrote in big letters “Property of May”. Last time she had surgery, someone took her monkey toy and placed it in the black hole of the children’s toy room in the ward. I...

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800 seizures a day: our epilepsy story

Posted on Nov 14, 2014 | 3 comments

800 seizures a day: our epilepsy story

This week on the Firefly Garden, bloggers from around the world are sharing stories about their children and epilepsy. I suppose our story makes for pretty grim reading. But years later, with May’s seizures down to 1 to 2 a day and causing her very little distress, we feel it is a triumph. Here is the post and make sure to click on the links at the bottom to read other parents’ stories: My daughter, May, was born with a severe brain injury. She had seizures every day, from birth. She has taken, at various points, anti-seizure medications including Phenobarbital, vitamin B6...

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What’s happening to May’s hips?

Posted on Nov 11, 2014 | 2 comments

What’s happening to May’s hips?

A year and a half ago, May had a major hip operation. She recovered well. There were some lingering issues — like she still crosses her legs and you can see one of the metal pieces holding her hip bone in place under her skin. Not nice and not ideal, but much better than the pain she had been in. Why did she need surgery at three years old? You probably shouldn’t read this if you are squeamish. In recent months, May has not been doing as well. At the time of her dental surgery, we suspected her pain wasn’t entirely in her mouth and that theory has been proven right. She can...

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Was this year a Halloween fail?

Posted on Nov 1, 2014 | 2 comments

Was this year a Halloween fail?

Every year I dress May up and get her ready to go trick or treating and every year she doesn’t come along. In 2012, it was just the cold and the dark that did it. In 2013, well… May doesn’t understand why anyone would want to go out after dark when they could be cuddling with their daddy on the sofa. This year it was her hip. She needs follow up hip surgery to adjust the work they did last year around her growing body. For the last couple of months, she’s barely been able to stretch out her right leg. I’m chasing it up – but I haven’t received a date...

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What you don’t know about my husband

Posted on Oct 13, 2014 | 3 comments

What you don’t know about my husband

I am the face of this blog. As such, people often tell me how much they admire my dedication to May. What people don’t realize is that my husband deserves much of the credit. My husband is May’s main caregiver. Her bather. Her chef. Her afternoon sleeping companion. She’s watched a full Tour de France. Twice. All because she spends so much time with him. “This is the song that proved May has better taste in music than you, Stacie,” is a typical aside in our conversation. And May does genuinely has a more eclectic taste in music than I do. Why? Because she spends...

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