I learned early on that there is a separate growth chart for kids with Down syndrome. That extra chromosome often makes the child grow more slowly, therefore they are shorter and smaller than most other people. People with Down syndrome usually develop at a slower pace in general, both physically and cognitively.
Cooper was born at 6 pounds even and 17.5 inches long. His stats were almost identical to his sisters when she was born. But his growth has been much, much slower. My first baby started solids and gained an incredible amount of weight. She was easily in 18 month clothes by the time she was one year old. Cooper, on the other hand, is just barely starting to fit into some 12 month clothes. He's nearly 14 months old.
We started working with Early Intervention when Cooper was about 3 months old. The occupational therapist helped us work on drinking through a straw when Cooper was somewhere around 6 months old. He picked it up incredibly fast, way faster than we anticipated. Once he knew how to drink through the straw, I gave him a baby food pouch and he sucked it down in less than a minute. It was impressive and surprising.
Another concern when having a baby with Down syndrome is feeding issues. I had read and heard about all kinds of things. Low muscle tone affecting the ability to sit up, which inhibits the child's ability to swallow safely. Choking can be a bigger hazard for that reason. Some also suffer from aspiration, so that any food/liquid gets into the airway instead of into the stomach, and that can create a whole host of other issues. I worried a lot about how and when to start solids with Cooper. I worried about doing it safely.
At Cooper's 9 month appointment, we found that he hadn't gained much weight between 6 and 9 months. It was barely a pound. The doctor wanted him to gain more weight, and I agreed. He had exclusively been getting pumped breast milk; we hadn't really figured out how to nurse well, but he took a bottle well since the day he was born. I started supplementing with formula and adding avocado oil to every bottle. I refreshed on baby CPR, got braver, and fed him more solids. I found that he LOVES to eat. There isn't much that he won't eat. He didn't appear to have problems with aspiration like I thought he would, but I was cautious with the size and amount of solids I gave him because obviously I didn't want him choking.
He gained over 4 pounds between 9 and 12 months, much better than the 1 pound at the previous checkup. He looks like a chubby, squishy little Michelin man. I think once he started gaining weight he had more energy because he also started sitting up on his own and trying to crawl about this same time.
Today, at about 14 months, Cooper loves his puffs, his water sippy cup, his bottle and almost anything else we put in front of him. In small pieces, of course. He can pick up food, which was something I worried about. Cooper's pinkies and index fingers curve inward slightly. I remember at one doctor appointment not long after he was born, I asked the doctor if there were surgeries to fix crooked fingers. The doctor looked at me funny. It was obviously not a question he'd heard before. I thought those subtle differences in his hands would create issues for him as he learned to eat, hold a pencil, and other basic tasks. So far it hasn't inhibited his ability to pick up food. He eats very well most of the time. I just hope he continues to be a "good" eater, because his sister, on the other hand, has entered a picky phase that we really don't appreciate at meal times.
The next step with feeding will be learning how to self feed and drink from a cup without a straw. But I'm trying really hard not to focus on the next steps so much. It's in my personality. I want to be growing, reaching for the next thing. Pushing myself and my kids to get to the "next" whatever. It creates a distance in my relationships with my kids when I focus on what they "should" be doing next, instead of enjoying where they are now and celebrating the wins when they come.
It's one of the many perspective shifts Cooper has shown me. I always heard the phrases like"be in the moment" or "be where you are" and thought I knew how to do that. Maybe I did a little bit. But now, I'm forced to see those phrases in a new way. When you wait months just for your child to smile at you, months for them to roll over, and months for them to be able to sit up, you really do have to think differently about what comes next. And there are things we're still waiting on Cooper to be able to do. You'll drive yourself crazy pushing for the next step. I should know. I've been crazy about getting to the next step more times than I'd like to admit.
One of my favorite phrases from our growth chart is, instead of saying: "I can't."
We say: "I'm still learning. I'll keep trying."
With feeding, with crawling, with everything in life, "I'm still learning, and I'll keep trying."
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