May's History

You gotta see this: May standing

Posted on Nov 28, 2015 | 4 comments

You gotta see this: May standing

As a child with special needs grows, sometimes it can feel like her development plateaus. Or at least, the time between developmental milestones is long or the worry is she won’t hit another. To be frank, May doesn’t hit those milestones. She is happy. She isn’t in pain. Her health and sleep have settled — and, as such, her development is pretty stable too. As in, she is what she is. And, we’ve accepted that. Before May had hip surgery, in June 2013, I would hold her hands and she would be able to stand upright and even dance around a bit. See her here: The...

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Why I bottle-fed my daughter and don’t regret it

Posted on Jan 28, 2015 | 1 comment

Why I bottle-fed my daughter and don’t regret it

My breastfeeding battle lasted five weeks. “Battle” is the delicate way to describe it. The first five weeks of my daughter’s life, all spent in the neonatal intensive care unit at our local hospital. It was hard. I can’t deny that. And it was all because of breastfeeding. May was born brain-damged and even that she could suck was a victory. The breastfeeding team in the hospital were very supportive. They visited me every day, anytime I needed them. My daughter seemed to be making progress, but she was still dependent on tube...

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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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Happy Birthday May! You are 5!

Posted on Apr 23, 2014 | 9 comments

Happy Birthday May! You are 5!

Sorry? May is what??? ((Gasp. Choke. Cough.)) Five? Yes, it’s happened. And this year my birthday cupcake making ended in disaster. Who knew Thomas the Tank Engine cupcakes (my choice clearly) have both cupcake mix AND frosting mix in the box. And, that they can’t be interchanged. NOTE TO SELF: Don’t open a bakery. As with previous birthday posts, let the celebrations begin! May, when you were born, here is what the doctors definitely knew you would be able to do: – pee – breathe Now at FIVE years old you can: – Bash your monkey toy and play independently...

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By popular request: May’s first steps!

Posted on Feb 28, 2013 | 11 comments

By popular request: May’s first steps!

Today, I received an emailed bulletin from BabyCenter. Subject: Is your baby walking? It landed in my inbox because my baby, Ieuan, turned one only two weeks ago. He is like any one-year old, more of a toddler now than a baby. Crawling everywhere. Standing on shaky legs, with a big grin on his face and one small step away from delicious trouble. And, that’s wonderful. That’s exactly how it is supposed to be. But, I have another child. My daughter, May, who is also a “toddler” though she has never toddled. She is three. May is severely brain-damaged. After she was born, the only things the...

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