One of those weeks

This week has been one of the toughest I can recall, and we’ve had some pretty tough weeks in the past year.

Monday: Was Monday. That’s enough.
Tuesday: Jury duty. And then a leak started in our kitchen ceiling, which still hasn’t been fixed nearly a week later, and which is now also a large hole in our kitchen ceiling. Followed by the joys of condo living when things like leaks happen.
Wednesday: Stellan’s speech therapist, who we love, told us that she’s leaving NYC. Next week!
Thursday: Quentin fell down the subway stairs on his way home from work. After a visit to the hospital this morning we learned that fortunately his ankle isn’t broken, just badly sprained, but he can’t walk without crutches. And if you saw Quentin walking with crutches, you’d probably say he can’t walk WITH crutches.
Friday: Stellan was under the weather and screamed bloody murder until finally, FINALLY falling asleep.
Saturday: Because I’d slept with Stellan Friday night to keep him calm, I ended up sick too.

But there were some good things too. Like the fact that Quentin and I had not one but two date nights this week to see the NY Philharmonic play. First with a series of Hitchcock movie scenes. And on Saturday night accompanying the entirety of 2001: A Space Odyssey. It was incredible.

We also got approved for Stellan to start getting physical therapy five times per week through Early Intervention, up from his current two sessions per week. So the little man will be working harder than ever.

And tonight, this happened. Stellan managed to feed himself for the first time ever. Which makes up for almost all of the crappy things that happened this week. Even if the leak in the kitchen is like a form of water torture…

Stellan Feeds Himself! from Love, Stellan on Vimeo.

65th Wedding Anniversary (not ours!)

Today my grandparents celebrate their 65th wedding anniversary. I feel so lucky to have such amazing people in my life, and in Stellan’s life. They have taught me more than I could possibly list, from tangible things such as how to waterski and ride a bike (not at the same time), to intangible things like how to be kind and loving and how to make a partnership not just last but really flourish.

Thank you Amma and Poppy for being such incredible role models for marriage and for life. Here’s to another 65 years!

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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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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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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