Posts made in January, 2010

May on tour

Posted on Jan 31, 2010 | 2 comments

London  – Detroit – Wales – Chicago… and now – Palm Desert, California. May is half-way around the world. Her mama is with her: soaking up the sunshine, admiring the snowcapped mountains, sleeping in while Grandma does the early shift, swimming outside – that’s right! And, not only swimming outside, but walking, eating, chatting – all outside! All this is possible in Southern California. The amazing thing, and perhaps I say this too much – or maybe I can never say it enough – is that when May was first diagnosed I didn’t think...

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Last week – update

Posted on Jan 29, 2010 | 3 comments

The short version: Depressing. Hard work. Some moments of major positivity. The long version: May started school and her father visited her new nursery, both of which I think are amazing places that will strive to improve May’s development. May and I also met with multiple professionals. In general, I’d say that everyone involved with May’s care has her best interests at heart. Or mine. But, sometimes, their professionalism gets in the way. For example, May’s appointment with the big wig metabolic consultant at the children’s hospital. In reference to the...

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May’s first day at school!

Posted on Jan 21, 2010 | 3 comments

Some people would say that eight months old is far too young to start school. HA! I say to you. HA! And – double HA! Yesterday, May and I started at Small Steps. Class consisted of songs and toys combined with lots of stretching and movement. They used drums and chimes, lots of textures and colors, bubbles and sprays of water. Even though the teachers made sure it was fun and stimulating from start to finish, May wasn’t exactly a perfect student. Unless your definition of a perfect student is one who screams from the moment class begins until it ends, stops to poo twice and...

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Jam-packed week

Posted on Jan 18, 2010 | 2 comments

Every day this week, May has some kind of appointment. It is always inevitable right before I leave for the States – which I am on Saturday. But, before that happens, we have to make it through this marathon week. Physio on Monday. Official statement about the negligent pharmacist on Tuesday. Small Steps class on Wednesday. SALT on Thursday. Then, on Friday, off to the hospital for the big wig metabolic consultant meeting. In between that, I will be ringing people. I asked for a new visual impairment therapist over a month ago, and I know someone was assigned to her, but she...

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This week I’m… focusing on hand to mouth.

Posted on Jan 13, 2010 | 3 comments

Just a half hour ago, May snuggled into my arm, her head against my chest, positioned for the final drift off into sleep. Nestled in, her hand naturally curled towards her face. She often lies like this, sometimes even sucking a bit on the edge of her hand if she can place her head close enough. I position my hand under her arm in case she needs it steadied. Tonight, May opened up her hand, each finger spread out including her thumb. She paused for a split second and then stuffed her thumb in her mouth. I watched in total, absolute awe as she suck, suck, sucked. She didn’t jerk it out....

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