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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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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Yesterday evening after work I was chopping cucumbers for a salad (I have us on a temporary veggie binge following a weekend steak binge and in preparation for a long-weekend New Orleans southern fried binge) and saying “Chop! Chop! Chop!” with each slice.
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We celebrated my second Mother’s Day very much the same way we celebrated my first – at my grandparents’ house in Pennsylvania. Last year was the first time my grandparents got to meet their first great-grandchild, and my grandfather nearly pushed me out of the way, he was so excited to get Stellan out of his car seat.
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It has been brought to my attention by several Stellan fans that I haven’t been posting regularly enough, and believe me when I say I’m very aware of it. The fact is, being a parent is tough, a working parent tougher, and a working parent to a special needs kid… well, I honestly feel like I’m running on vapor most of the time. Quentin and I are often like two zombies, only slightly faster-moving. We never get enough sleep, we both have very demanding jobs which we love, and Stellan’s care is more than a full-time job in itself.
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We are in Paris for a week, mainly for work, with the weekends tacked on to spend with Stellan’s French grandparents. During one of our visits last year, just around when we learned of Stellan’s diagnosis, we met with a pediatrician here so that if he ever got sick while visiting he could be taken care of. Knowing we were coming back this week, she arranged to see Stellan again today and also set up an appointment with a pediatric neurologist. A third opinion, if you will. And the results were quite interesting.
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When we first got Stellan’s diagnosis, the neurologist told us NOT to turn to the internet for information. And of course I understand why. The surest way to get incredibly freaked out or depressed over anything medical is to Google it.

So for some time, Quentin and I obeyed the rule. I purposely didn’t search for anything about Pachygyria, Lissencephaly, or anything along those lines. We were so early in the process, with so much uncertainty ahead of us, it didn’t seem to make sense to read something that may or may not have been completely irrelevant to Stellan’s case, and ours.

But after a while, we wanted at the very least to find out if there were other kids out there like ours, other parents like us. How were their kids doing? And how were those parents coping?
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When I was about 8 months pregnant (or maybe even more), Quentin brought home a wonderful book. It told us what we could expect every day of the first week of Stellan’s life, and then every month for the first year, and then every six months or so until age five.

I didn’t really read much of it until we actually brought Stellan home because, well, I’m not really one of those “nester” types who does much advance preparation for things. Yes, even for babies. While some of our friends had their kids’ rooms beautiful decorated and totally stocked with baby essentials months before their little ones were due, Quentin and I were busy working right up until the moment Stellan arrived (quite literally) and hadn’t done much reading, let alone decorating.
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Quentin and I always figured we’d have kids. Plural. Maybe two, maybe four, maybe somewhere in between. And now that we have Stellan who, at 11 months, has the motor skills of a three month old, and whose future is uncertain… Well, we definitely know more than ever that there will be more kids in our family, whether we have one or two more ourselves, or adopt, or both. Stellan will need love and support from siblings as he grows. He’ll need to be pushed around and rough-housed with and challenged, just like any brother is. And he’ll need people on his side, to look out for him, and to love him just how he is.
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Tomorrow marks 3 weeks since Stellan had his G-Tube surgery, and in those three weeks we have seen a great deal of progress in our little man.

Most notably, today we put him on the scale at his GI doctor’s office, and he weighed in at 15 pounds, 5 ounces. This is a BIG DEAL. The fifteen pound mark has been an unbreakable barrier for us for months, and the longer Stellan went without crossing it, the more worried Quentin and I (and everyone who cares for Stellan) became.
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