Tag Archives: perseveration

2015 in Review

One thing I miss about doing a Project 365 or a Project 52 is the story I end up with for the year. At least with those projects, I’m shooting and blogging frequently, so I’m kind of keeping a virtual scrapbook of our lives. Instead of a Christmas letter (which last year was my very first one), I...

365 in 52 [2013] ~ Week Thirty-Six

Anna is having a hard time at school. Every day she comes home with her glasses completely cloudy with dried tears. And it’s making me heart sick for her. I met with her teacher Friday afternoon to discuss why she’s crying. The theory is that art class, one of only two classes where she is...

365 in 52 [2013] ~ Week Seventeen

Well… as good as last week was, this week wasn’t so hot. Anna was suspended from school on Thursday for an incident that happened on Wednesday. I debated on whether or not to share the details, but decided that Anna deserves to have people understand her behavior… and if you see someone agitated and acting...

These Are the Things You Don’t Want to Hear

So we saw Anna’s geneticist Tuesday morning. Really the only changes since the last time we were in three years ago is that Anna developed hypothyroidism, she has increased laxity in her joints, and her kyphoscoliosis is worse. There is an additional test we could run now if wanted, but it’s quite expensive… $7-9K at...

Anna’s 3-year Seizure-versary and Remembering

Today marks three years since I last witnessed Anna have a tonic-clonic (grand mal) seizure. The 4th of July will always have extra significance to me because of this. I can’t say for certain that she will never have another seizure again but I’m definitely more hopeful now than ever before. I fervently hope that...


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