Hamptons Weekend

This weekend, Quentin, Stellan, Ellie and I went to the Hamptons – a first for all four of us. We packed ourselves into a van along with another French family with two kids, a boy and a girl, and headed to East Hampton on Friday night. We stayed at an adorable dog-friendly guesthouse run by a lovely woman with five dogs of her own, and spent the weekend doing beachy family things.

We climbed sand dunes (which, by the way, is extra complicated when one person is on crutches, another one can’t walk and is finally getting heavy, and the dog wants to run as fast as possible in every direction at once), looked for sea shells, ate lobster rolls, played in the park, and went to a farm and got lost in a giant corn maze. Stellan loved being around the big kids, especially Solene, who is four and who loved to read to him and just be next to him. Stellan could really use a big sister.

On Saturday afternoon, while wandering around the little town of East Hampton, we stopped at a playground. Playgrounds are kind of tough for me sometimes because I see all the little kids Stellan’s age running around, climbing things, falling down… none of which Stellan can do yet. So first we went on the big swings together, which he always likes. And then, on a whim, I decided to put him into one of the “baby” swings on his own. This usually doesn’t work because of Stellan’s lack of head control – he usually flops his head back. But yesterday he sat forward instead, grabbed the front of the swing, and went swinging like a boss.

Stellan Swinging from Love, Stellan on Vimeo.

The Eyes Have It

When Stellan was about six weeks old, a small red dot appeared on his lower right eyelid. It slowly grew to a larger dot and as it became darker red and started to protrude a bit, Quentin in particular became alarmed. He insisted we take him to the doctor, which we did, and where we learned that it was likely a hemangioma and referred to a vascular specialist.

Stellan at 3 months
Stellan at 3 months

The vascular specialist, a very lovely woman named Dr. Blei, reassured us that this hemangioma was benign but may continue to grow, which was only really a problem since it was so close to Stellan’s eye. She suggested trying a topical solution (Timolol), which we dabbed onto the spot twice a day. She also suggested we take Stellan to an opthamologist to make sure the hemangioma wasn’t causing any vision problems or an astigmatism.

Which is how we ended up in Dr. Steele’s office. He took a look at Stellan’s eyes, further reassured us that we were doing the right thing in terms of treatment (the more invasive option was a laser), and told us that not only was there no sign of any astigmatism, but that Stellan’s vision was 20/20.

Less than six months later, we were back to Dr. Blei and Dr. Steele for a follow up. By that time, the hemangioma had practically disappeared and we had begun to taper off the medication. But we had much graver news, because Stellan’s MRI and diagnosis had come the month prior. When we think back now on our worry over Stellan’s little benign hemangioma, Quentin and I have to laugh sadly at ourselves. What was such a big deal and so scary was nothing compared to what was to come.

Stellan at 9 months
Stellan at 9 months

Both doctors were very supportive. Dr. Blei directed us to a wonderful neurodevelopmental pediatrician (who, like all of them it seems, did not accept insurance) and Dr. Steele looked us straight in the eyes and said, “Don’t let anyone ever tell you what your kid won’t be able to do. He will surprise you and everyone else.” In other words, he made us cry, in a good way for a change.

Fast forward a year and Stellan’s hemangioma has reappeared, which is unusual. So we visited Dr. Blei again last week and we are back on topical Timolol twice a day. We also saw Dr. Steele again, partly for a follow-up on the hemangioma, but mainly because our genetics doctor asked us to have his eyes checked again. Apparently certain syndromes have very specific issues with the eyes.

So Monday morning we were back in Dr. Steele’s office, which Stellan loves because there are lots of fun things to look at. Of all the things, Stellan liked the computer the best (anything that might play Sesame Street for him is an immediate draw), and that’s fine with me as long as he’s sitting up and holding his head up.

Dr. Steele checked out his eyes, did various little tests, took lots of notes, and finally said to me, “Your son is perfect, as far as his eyes are concerned.” Nothing is ever perfect with Stellan, clinically or medically speaking (his looks, however, are a different story), so I almost didn’t know how to process the information, aside from a warm feeling that overtook me, knowing that Stellan is lucky enough to have his dad’s perfect vision and not mine.

So there. Stellan has perfect eyes.

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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