Posts Tagged "blogging"

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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Health update from me: I’m one bald mama

Posted on Oct 29, 2014 | 1 comment

Health update from me: I’m one bald mama

Bring on the Halloween jokes early. I’m one bald mama and it is seriously scary that I don’t need a costume for next week. “What are you going to dress up as?” a nurse asked me today. “Me,” I responded. A sense of humor is good in these situations. But, of course, it isn’t all funny. Over the summer, I received two rounds of chemotherapy as an outpatient. This meant that my summer wasn’t stolen. I went to park with my kids. I felt the sun on my face and ate ice cream by the bucketload. My husband and I even went on holiday for the first time...

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Hello from me again! I’m STILL in Hospital Bed 1.

Posted on Oct 6, 2014 | 0 comments

Hello from me again! I’m STILL in Hospital Bed 1.

And, I’ll probably be here for a good while longer. I’ve finished the chemotherapy, but the recovery can take three weeks or more. Chemotherapy is one of the strangest experiences a person can go through. First of all, I’m allowing people to poison me. Secondly, it is totally unpredictable. People respond very differently to treatments, and I respond different day-to-day. So, Day 2 for me was the worst and I expected each day of chemo to get worse from that point, but instead they got relatively better. Relatively. It still sucked. One thing that keeps me going through it...

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Hello from Bed 1 on the Hospital Ward

Posted on Sep 25, 2014 | 5 comments

Hello from Bed 1 on the Hospital Ward

Remember when that bastard Leukaemia moved back in? Well, now he’s kicked me out of my house and imprisoned me in the hospital. I’m trying to be pissed off and not completely crack up. Basically, what happened was the out-patient chemo they tried over the summer didn’t work. Apparently, that isn’t so unusual with that treatment. Plan B was always more intensive hospital treatment. Welcome to Plan B. I’ll have chemo this week. Then it will take about three more weeks before I’ve recovered enough to return home. After that, we hope I’ll be back in...

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