The Sleep Experiment… night, what?

What night is it? I can’t remember, I’m too tired. I can’t tell you whether the Sleep Experiment is working. I have no idea. May isn’t sleeping through the night, that’s for sure. The fact that I’m writing this at 4 a.m. is proof enough of that. May still wakes up three or four times [...]

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Fevers and Misery Update

A typical day over the past few days opens with tears. Lots of fake crocodile tears. May imitates the sound of crying, without even the slightest hint of wetness in her eyes. May has perfected the skill of manipulation. As in: “Listen to my piercing cries! Don’t I sound like I’m in pain? Pick me [...]

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Abracadabra! Seizures Be Gone!

For almost two years, May’s entire life, she has been afflicted with seizures. These ranged from her first week with seizures so severe her doctors worried she’d stop breathing, to minor seizures that didn’t affect her health, but did disrupt her concentration. At their peak, these kind of seizures occurred several times every 10 minutes. [...]

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Six-Month State of Brain Review

Every six-months, May’s team review her “state of brain” (if you will allow me such a turn of phrase. Actually, this seems pretty minor compared to “half-brained baby” and no one seems to mind that). It is a developmental review, but “state of brain” sounds so much more accurate. Accurate and ominous. Accurate because they [...]

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This week I’m… drinking from a cup

This isn’t meant to sound like an argument for the “just stimulate them the best you can/there is nothing you can do differently to help your brain-damaged child” camp. It is, however, meant to sound like an argument for “if you can find something they enjoy, they will figure out how to do it better/faster” [...]

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The Seizure Diet

Early after May’s release from the hospital, it became clear that for the doctors, May’s seizures were their biggest concern. Like the rest of her injuries, the cause of her seizures perplexed them. One by one, May trialled numerous seizure medications, seven so far; currently May takes four. The most recent addition, Lamotrigine, May began [...]

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Seizures

My daughter has seizures every day. At one point, they were as frequent as three times every five minutes. That is 864 every day. Did I just write that? May had over 800 seizures a day? As I mull over those numbers, a nauseating weight grows in my belly.  Yet,  I’m thinking even worse things; [...]

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Ups and Downs

I try to focus on the positive aspects of raising May, but hard times are unavoidable. Tomorrow will be tough. May has an appointment with her SALT and then our key worker is coming over to help me fill out the Disability Living Allowance form. The form will take about four hours to fill out – no [...]

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Seizures, hospitals and apricot jam

Last week, May was admitted to the hospital for two nights to trial a new seizure medication, pyridoxal-phosphate (or, PP, as I will now call it) to replace pyridoxine. They are both Vitamin B6, just in different forms. Some babies react badly to PP.  They “forget” to breath. They pass out. They don’t wake up. [...]

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Exam Results

Today, the Boss had two major exam results to report to me. An EEG and a VEP. Neither were all that pleasant. May’s EEG still shows epileptic activity, which didn’t shock either of us since they have all shown that. What did shock us was when, as I described some of the twitching that concerned [...]

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