Posts made in March, 2010

Seizures, hospitals and apricot jam

Posted on Mar 31, 2010 | 0 comments

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. They require resuscitation. Just in case, we waited for a bed to become available in the High Dependency Unit, the most critical of rooms in the children’s ward.¬†Unfortunately, while we waited for this bed, her seizures increased dramatically. By the time she...

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This week I’m… knocking things over!

Posted on Mar 27, 2010 | 4 comments

Or, maybe I should say, knocking – very light, easily knocked – things over. Continuing May’s work with her hands, arms and sight, I’m focusing this week on her reaching forward to touch things. My sister inspired me. She bought May a stack of soft, light blocks as a gift. I have to admit, when I receive gifts like this, my heart clenches a bit. How much would I love May to stack blocks? But, even though I am so determined to stimulate May, sometimes I am also blind to the possibilities for her. In the States, my sister piled the blocks on top of one another and sat...

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And May said, “Let there be light…”

Posted on Mar 23, 2010 | 11 comments

There is so much a baby can not tell her parents or doctors. Can she hear? Taste? Can she recognize her mother’s smell or her father’s beard chaffing her face? In the hospital, we were certain May could see. She seemed to scan the room with interest and focus on objects. In later months, closer observations revealed that May did have a visual impairment. Besides the stiffness running down her shoulders through her hands, her inability to see became one of the most significant of her disabilities. May seemed to fix, but could not follow. She didn’t, still doesn’t,...

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Small Steps – Donate!

Posted on Mar 20, 2010 | 0 comments

May and the Small Steps School for Parents are inspiring people young and old to get off their behinds! My friend Kate has mobilized her form group (that’s homeroom for you Americans) to raise money for May’s school. Katie was one of the first people to meet May back when she was in her incubator in the Neonatal Intensive Care room. She visited me while I was still in the hospital, bringing me a survival kit of girlie magazines and books, not to mention herself. She has been an incredible support and is obviously passing on those traits to her students. If you are feeling left...

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This week I’m… leaning on hands.

Posted on Mar 18, 2010 | 2 comments

Let the jet lag begin. We are back in London. Our flight was fairly uneventful, save May projectile vomiting an entire bottle of milk into the aisle, and me showing more signs of foot in mouth disease. Two lovely air hostesses approached me on the plane to see if I needed anything. May ceased bouncing momentarily as she had the shakes. One hostess said in a cutsie baby voice, “Oh! Poor thing do you have the hiccups?” and then when it reverberated on May’s face in tiny, repetitive spasms, she asked me, “Is she cold?” “No,” I said, “she is having...

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