Posts made in November, 2010

This week I’m… wearing my Supergirl Suit

Posted on Nov 30, 2010 | 13 comments

This week I’m… wearing my Supergirl Suit

Behold! May the Superhero Princess! This week, a new weapon in her cuteness arsenal – her Supergirl Suit. May’s lycra suit is made to measure and fits like a glove. May has to be zipped into it at six points: front, back and both arms and legs. Once inside, I challenge you not to think she looks like a contender in the Tour de France only, of course, much much cuter. The suit is meant to help her in two ways. First, it will give her added support. Two different materials are used, one with a greater give than the other. Along her back, for example, the white lycra is stiffer than...

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Harris in Hell (for charity!) – UPDATED

Posted on Nov 25, 2010 | 2 comments

Harris in Hell (for charity!) – UPDATED

Our good friend Andy Harris is running through Hell (literally – Hellrunner Down South) all in the name of Small Steps, the wonderful school that May and I attend every week. Good news that while Andy will destroy his body (and soul?), May has been enjoying Small Steps more and more each week. Despite their best efforts – silly songs, fun toys and chocolate pudding – May is often a bit of a grump at Small Steps, even at times very angry. Small Steps is challenging for our little Princess of Cuteness (a title Andy bestowed on May and I believe one that will stick). As I...

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The Seizure Diet

Posted on Nov 21, 2010 | 5 comments

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 two weeks ago though, due to its side effects if administered too quickly, it will take three months before she is on the full dose. We hope, as we always hope, that this one will be the one. That this one, will be the one, and not the four...

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PODD (not a film about alien spacecraft)

Posted on Nov 17, 2010 | 9 comments

PODD (not a film about alien spacecraft)

Pragmatic Organisation Dynamic Display (PODD): the clumsiest mouthful of words meant to be a communication system, or a revolutionary system of communication for the speech impaired? Among the debates eternally raging in my mind, the one whereby I choose to adopt or rubbish a new therapy has to be the most challenging. Every week, I am tempted by new therapies, equipment and advice. The people championing these can seem evangelical. There is often no quantitative research to back up their theories and most of what they show as proof is circumstantial. They are always extraordinarily kind and...

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This week I’m… explaining how May stood up.

Posted on Nov 15, 2010 | 4 comments

Many times I’ve heard that May’s progress is down to her parents. But, if May never learns to walk, whose fault will it be then? In my last post, I wrote about May’s ability to stand independently (and party til 4 am). The truth is, while I would like this blog to document May’s progress, I don’t know that I will be any the wiser in the end. How many of her achievements are down to us and how much down to her? May’s standing is a good example. What got her from not supporting herself at all but enjoying being bounced, to this video a year and a half later?...

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