The Small Family     

It seems as if young Samuel is out to prove that he can buck the odds with this whole Down syndrome business--and best his brother in the process!

Let me backtrack for a moment… One of my all-time favorite Theo moments, which I think I’ve mentioned on this blog before, occurred when Theo was two months old. We were pretty sure he was starting to roll tummy to back on his own, though we hadn’t seen the full roll firsthand yet. So I mentioned this at his two-month checkup, and the pediatrician said, “Oh, he’s really too young to be rolling yet…” and then trailed off as Theo, on his tummy on the exam table, promptly flipped from tummy to back as if to say, “Excuse me, lady, I most certainly am not too young to be doing this!” Dr. G just laughed and said, “Well, okay, I guess you aren’t too young to be doing that!”

Fast-forward almost four years. Our new pediatrician said it was fine to start Sam on tummy time at any point, as he actually has really good muscle tone for a baby with Down syndrome and thus should be able to work on the same things any newborn does. So the other night, I laid a blanket on the floor and put Sam on his tummy to see what he’d do. Darned if the little fighter didn’t roll from tummy to back--at a mere 13 days old! Now, this is about a four-month milestone for the average baby, so Theo was early to do it at two months, and Sam has now bested him by doing it at 13 days! I was stunned--and so darned proud of the little guy! It took him several minutes of trying, but he did it! I will post a video of it on the More Videos page, although you can’t quite see the finished product, as he completed the roll right after I turned off the camera (of course) and hasn’t yet repeated it.

This Feat of Strength makes me think that Sam’s extra chromosome has given him some sort of super-powers!! If nothing else, I think this kid is going places. :-)

Speaking of Down syndrome, I have cried only once this week--when we had Sam’s two-week appointment and got the confirmation that he does indeed have Down syndrome--specifically, Trisomy 21, the most common form of Down’s. It’s not that it was any great surprise, but I guess I had just the tiniest shred of hope that the signs of Down syndrome were all just a big coincidence and that he actually didn’t have it. No such luck. But, on the plus side, he once again checked out as a very, very healthy baby boy, especially given the fact that he has Down syndrome. So I am delighted and relieved about that!

We also met with a lactation consultant this week--one who has worked with Down’s babies in the past. And she was very encouraging--she said Sam has fantastic oral muscle tone for a Down’s baby, and she thinks his nursing problems are more to do with him being almost three weeks early than him having Down syndrome. He wasn’t latching or sucking very well, and he was falling asleep almost immediately whenever I would try to nurse him. A weak suck/poor latch is very common in babies with Down syndrome, but the LC actually said that Sam has a surprisingly good suck and that he’s probably just so sleepy because he was a bit early. And sure enough, he’s starting to wake up more now, and his breastfeeding skills are getting better every day. He still gets the majority of his nutrition from a bottle (of expressed breast milk), but he is now able to latch on and suck, so that’s a big step forward!

As long as we’re on the subject of specialists, I should mention Theo’s occupational therapy appointment, which we had the day before Sam was born. I meant to blog about it that week, but then Sam was born and, to be honest, I completely forgot what else we had done that week!

So you may recall that when they evaluated Theo for possible Asperger’s (which he does not appear to have, thank goodness!), the Kaiser team who evaluated him felt that he had a delay in fine-motor skills, and they recommended occupational therapy. Chris and I went along with the referral, although we were a little skeptical--to us, it just didn’t seem that important that he couldn’t draw a face, for example. It wasn’t surprising because he just plain doesn’t like drawing! But, still, we felt as if we ought to at least give it a chance, in case it would be of some help to Theo.

I have to say, I’m really glad we did! Upon sitting down with the occupational therapist (OT), I realized that the original evaluation team hadn’t really worded things well when they spoke to us. It wasn’t that they cared that Theo can’t draw a face (actually, he can--under much duress--but that’s beside the point); rather, they noticed that when he tried to draw, he was holding his crayons in an unusual way to compensate for his palm and wrist muscles being slightly underdeveloped. As the OT explained it to me, because Theo doesn’t like to do things like drawing or writing, his palm and wrist muscles are slightly weaker than they should be. He compensates with his lower-arm muscles, but that doesn’t give him a good foundation for gripping a pencil, which obviously he’ll need to do at some point when he learns to write.

So, the OT came up with some fun activities to help strengthen those muscles, and Theo ended up really having fun at the session. And she gave us a few suggestions for home, too, but it was all very low-key--she said, “Just try these for even five minutes a day, and that’ll be fine. It’s a very minor delay--nothing too worrisome. We just want to help him strengthen those muscles so he’ll be better able to use them when he starts writing.”

Ah, okay! If they had explained things to us this way in the first place, we wouldn’t have been so skeptical about it! Anyway, Theo has another appointment in a few weeks, which I shall happily take him to.

We had visitors this week--fun! Early in the week, Grandma Kathy, Grandpa Tom, Aunt Tanya, and Great-Grandma Norma came for a visit. And later that same day, Auntie Jeanette and Justin came, too! And on Saturday, we went up to Roseville to get pictures taken (of the boys) and to visit Grandma Diane. I’m mad at myself--forgot to bring the camera to get pictures at Grandma Diane’s house! Oh well--next time.

People are even getting to see Sleepy Sam awake sometimes now. He’s starting to fall into newborn patterns that I’m familiar with, which makes me breathe a sigh of relief. At first, he slept so much and ate so little that we were a bit nervous! But now that he’s been out in the world for two weeks, he’s starting to wake up a bit more. I’d say he still sleeps 20 to 21 hours a day, but he was sleeping about 23 hours a day and barely waking to eat. He has also adopted the habit of cluster feeding at night--that is, eating and eating and eating over a few-hour span and then sleeping decent blocks during the night. (It’s sort of like storing up food for the night.) This is positively lovely because not only do we get to spend some awake (eating) time with Sam after Theo goes to bed, but we also get some decent blocks of sleep from him overnight. (He generally finishes cluster-feeding around 10pm, sleeps until 2 or 3 am, eats a bit, and then sleeps until 6 or 7 am. I can certainly handle that!)

He’s also showing a bit of the feistiness Theo has--but only a tiny bit. He’s still very much a mellow guy who is happy as long as you’re holding him and he’s not hungry--but when he does get hungry, he will let you know it! He lets out these little angry-sounding bird squawks that are pretty darn cute. :-) It’s good to know he’s got a bit of fire in him, though I don’t think he’ll hold a candle to his big brother in that department.

Before I wrap up for the week, I have to reflect on why I think Sam was just truly meant to be part of our family. If you’ve read our blog for the past year, you know that we had fertility problems this time around. After about eight months of trying unsuccessfully to have a baby, we consulted fertility doctors. The tests came back showing that I was no longer ovulating, and we were told that we could not conceive a baby “without help.” I was given a prescription for fertility drugs and told to start them at my next cycle.

But then my next cycle never started. Because I was already pregnant. Yes, when I was told I could not conceive on my own, little Sam was already starting to grow inside of me! Meant to be, right?

Then I have discovered this week that the body often miscarries babies with Down syndrome. But mine didn’t. My body held onto little Sam and let me carry him to term. Meant to be, right?

Sometimes the signs of Trisomy 21 show up in a 20-week ultrasound. Ours didn’t. We turned down the prenatal genetic tests, but we did have a 20-week ultrasound, which showed nothing but a typical baby. Now, we would’ve carried the baby even if we had known something was amiss, but the fact that nothing showed on the ultrasound allowed us to have a stress-free pregnancy, rather than one spent fearing the worst. Meant to be, right?

We had that big scare during labor where Sam’s heart rate dropped horribly. But then it came back up. Because he was meant to be, right?

And now we have a baby with Down syndrome--and so many of these babies have a lot of serious health issues. But ours doesn’t appear to. Because he was meant to be…. :-)