Another diagnosis

Pachygyria. Lissencephaly. Microcephaly. Polymicrogyria. Failure To Thrive. Hypotonia. So many words have been thrown at us and diagnoses received in the last year. And today something new was added to the list. Spastic quadriplegic cerebral palsy.
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August 22

Today Stellan is 18 months old. I never got around to writing about Stellan’s first birthday, partly because I unfortunately didn’t have time, but I think mostly because it was filled with such conflicting emotion for me. My friend Becky reached out to me at the time to see how I was doing, since she felt similar emotions when her son Elijah turned one – a mix of, “Hooray! We made it!” combined with a lot of sadness because our little men couldn’t blow out candles or smash cake or really get what all the fuss was about.
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Anniversary!

Today is our 4 year wedding anniversary, and we are celebrating it in San Diego where it all went down.

The truth is, we have two anniversaries, because our first wedding was in Paris in January 2009 at City Hall in the 17th Arrondissement. But August is the big one. And we celebrate both, because… Why not?
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The Hard Days

Most days I run so fast through the day that I don’t have a lot of time to think. That’s not true – I’m thinking all day long. But it’s busy thinking, not thoughtful thinking. It’s making a to-do list in my head, crossing things off, getting things done, running from one meeting to the next. I don’t often have time to dwell, and frankly I’ve never really been one to do much of it anyway. I’m more of an onwards and upwards type.
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Vacation

We have been on vacation for almost a week, just Quentin and I, in Morocco. Stellan has been in Paris with his grandparents, living the good life that one lives with grandparents in Paris. (Wine, cheese, oh la la.) We came to Morocco for a wedding. To officiate a wedding, more specifically, enabling us to cross off our bucket list something we hadn’t even realized was on it.
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Neurology Update: Our New Friend Baclofen

At the beginning of June we had Stellan’s quarterly neurology appointment.   It ran much as they usually do, though this time they had genetics results (which are still really non-results and which I haven’t quite figured out how to write about just yet) and the nurse practitioner made some obnoxious comments, as she seems to do at every visit.
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Father’s Day #2!

We spent Quentin’s second Father’s Day in Pennsylvania with my grandparents (my mom’s parents, and Stellan’s great-grandparents) doing the best things to do at your grandparents’ house: eating, sleeping, chilling, and repeating.
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A Step Backward. Or Sideways.

On Friday morning I took Stellan for his second barium swallow study, in which he drinks white goo (barium) of varying densities while being recorded on a video x-ray to see whether he’s aspirating, having some or all of his food go down his windpipe and possibly his lungs. Basically, aspirating = bad. It can lead to choking (but doesn’t always) and can also cause pneumonia, and nobody wants that.
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15 months! 18 pounds! 9 teeth!

Stellan finally hit the 18 pound mark this week. He had been gaining weight nicely after his g-tube surgery and then leveled off the last month or so due to some problems keeping his food down, which has been stressful for us. So this still leaves him below the growth curve for weight, but at least he’s gaining again.
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Dr. No-love, or how I learned to stop worrying and fire a surgeon

Today was one of those days where, if we weren’t leaving tomorrow morning for a short vacation, I probably would’ve just had to say “check please!” and exit stage right. And the main reason was the most evil person I’ve ever met in my life.
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