Life with a CP Baby

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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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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May’s first day at school: DENY. DENY. DENY. (from the archives)

Posted on Sep 15, 2014 | 3 comments

May’s first day at school: DENY. DENY. DENY. (from the archives)

From the archives a post for all those special needs parents whose children are starting school this month. DENY. DENY. DENY. I’ve been there. I’m a few years down the road now and I can say, categorically, it was the best thing we ever did for May. Here’s why: She attends a wonderful school with therapists on call and lots of people who love her. There are all kinds of things there that there is no possible way I could provide: hydrotherapy, dance class, sensory rooms and a massive playground. Hats off to you, parents. This will not be an easy term. Stay strong. You are...

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A toothy tale of incompetence and negligence

Posted on Sep 9, 2014 | 6 comments

A toothy tale of incompetence and negligence

May was just wheeled into surgery. I’m sat amongst the other parents awaiting our children’s fate. I’ve said it before, but praise be all parents who pack a bag for their child to take them – not on holiday – but to the hospital where someone will drug them and cut them open with a knife.  

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