July 28, 2013: The Baby Is Orange

I bet you’re wondering why we have an orange baby, aren’t you? No, Theo didn’t paint Sam orange. And no, we didn’t inject him with dye (well, not intentionally, anyway). The reality is that Sam is a very picky eater—not only will he not eat anything with any texture other than puree (though he did successfully ingest an animal cookie this week—his first real solid food!!), but he’s very picky about what purees he will eat. He’ll eat meats and he’ll eat a few veggies. He hates most fruit, and he’s picky about what veggies he’ll eat. As it turns out, the veggies he likes are high in beta-carotene—squash, sweet potatoes, and carrots. And so, because he eats these a fair amount, he has now turned a lovely shade of yellowy-orange. And evidently, even if we change his diet, he’ll retain this color cast for a couple of months. So I guess we’ll have an orange baby for a while….

In case you’re wondering how we know it’s carotenosis and not jaundice, it’s because the whites of his eyes are perfectly white. If it was jaundice, they’d be yellow. He has his 18-month appointment (and blood work) next week, so we’ll have the doctor take a look, but we’re just about 100% certain that it’s carotenonsis, which is completely harmless and just means…well…you have an orange baby! In the meantime, I’m pushing the purple foods, as he’ll sometimes eat those, in the hopes that perhaps purple and orange will turn him a lovely shade of…I don’t know…green?! 😉

By the way, this is yet another area in which Theo was far easier than Sam. Sometimes I feel like Theo gets the short end of the stick on this blog because he was a much tougher kid than Sam (I don’t want Theo looking like a poop and Sam looking like Mr. Perfect, you know?), so I feel compelled to point out areas in which Theo was easygoing and Sam isn’t so much. Eating is definitely one of them! Theo was the least picky eater I’ve ever seen for a very, very long time. He’s getting a little more finicky now, but as five-year-olds go, he’s still a very easygoing eater. He generally likes most things, as long as they’re separated. He doesn’t care much for casseroles, though he will eat soups. But in general, if you give him a plate of a la carte items of protein, veggies, and fruit, he will eat most anything. He’s a good kid that way. 🙂 His brother, on the other hand, will likely be one of those little fussy eaters who only eats vanilla pudding and white bread or something.

So, this has been a week of milestones for both of our boys! First, THEO LEARNED TO SWIM!!! I honestly didn’t think it would happen this year. He was so opposed to putting his face in the water. I’m not even sure it was so much fear as just distastefulness. He doesn’t like getting water in his face. It doesn’t seem to scare him, necessarily—he just doesn’t like it. But anyway, he got past that enough to start putting his face in the water at the end of last week, and by the end of this week, he was actually swimming! I cried when he did it the first time—I am so relieved! We live across the street from a pool, Grandma and Papa have a pool, and there are just pools and lakes and rivers everywhere around here, so I was not comfortable having a child who couldn’t swim. For safety’s sake, I wanted him to be able to swim. And now he can! He’s still learning, of course, but he can do three or four strokes of the breaststroke with his face underwater, and he can get himself to the surface from underwater. The next step is learning to take a breath and continue swimming, which I think Miss Karen will do with him in his next swimming session. (He has a week off and then one more two-week session before the summer ends.) So way to go, Theo! Way to surprise your Mom and Dad!!! (And we’re pretty sure his swim teacher is a miracle worker….)

Sam, too, met milestones this week. He met a whole slew of them, actually. It’s funny—I’ve heard it happens this way in kids with DS. They will plateau for a long while, with no new skills on the horizon, and then suddenly they’ll meet a bunch of milestones at once…and then plateau again. This week, Sam ate his first real solid (an animal cookie, as I mentioned), mastered pulling to standing, mastered climbing a single stair, got two new teeth (a top-front one and a bottom-left one), learned to respond to a couple of prompts, and added a new word! The last two milestones are my favorites, in no small part because we got the results of his speech evaluation this week, and they were predictably dismal. Actually, they were even more dismal than I thought—he was evaluated as having a “severe delay” in both expressive and receptive communication, and he was assessed at a 3- to 6-month development level in speech, with a smattering of skills in the 9-month range. Oy vey…

I knew speech was by far Sam’s biggest area of delay, but I hadn’t expected it to be that bad. One thing to note is that they do tend to assess on the low end, since the whole goal is to qualify him for therapy services. And the other thing is that he actually has some of the skills that would’ve qualified him for a higher development level age-wise, but he doesn’t use them consistently, so they couldn’t bump him up. For example, they wanted to know whether he turns to respond to his name. The answer is yes…but not always. So if he doesn’t always do it, he doesn’t reach a certain age group on the development chart. Same thing with games like “So big!” He would do it occasionally but not consistently, so they couldn’t assess him at a higher level for it. Sigh…

But this week, he started responding to a few cues much more consistently! For one, he’ll do “So big!” pretty consistently now! And he’ll also clap appropriately when I sing “If you’re happy and you know it, clap your hands!” And he’ll raise his arms appropriately when I sing “If you’re happy and you know it, shout ‘hooray!’” And he’ll now pull a cloth up in front of his face if you cue him to play peekaboo. So these are big developments in receptive language—we give him a cue, and he responds appropriately.

On the expressive level, he added a new word to his lexicon, and it is completely melting my heart! We’re pretty sure he says “Mama,” “Dada,” and “hey” appropriately, but his newest one is quite a surprise because it’s not an easy word: “brother!” Chris thought he heard Sam say it to Theo the other day, but I wasn’t sure. And then lo and behold, I heard him do it several times. He’ll look up at Theo and say reverently, “bwuh-vuh!” It’s adorable! I always call Theo “brother” to Sam, and I call Sam “little brother” often to Theo—as in, “Sam, is brother being silly?” or “Theo, little brother is being a cranky boy today!” I don’t know why—I just seemed to naturally fall into that more than using their names with each other. So it’s not surprising that Sam refers to Theo as “brother”—just surprising that he’s attempting such a difficult word, given that he has a very limited repertoire of vocal sounds. I’m so proud of him—and I think it’s so neat that he can call his brother something now!

As long as we’re on the subject of speech, I’ll also share that we are probably going to have tubes put in Sam’s ears. As you know, he’s had persistent ear infections for months, and he often has fluid in his ears. Not only do the infections mean he’s on antibiotics a lot, which I’m not crazy about, but the fluid means his hearing is affected, and it’s very likely that’s the cause of part of his speech delay. Kids with DS almost universally get tubes in their ears for these very reasons—their ear canals are particularly tiny and shaped a bit differently than those of typical kids, and it makes fluid buildup and infections a persistent problem. So this comes as no surprise to us, and we were really only waiting for Sam to qualify for the tubes. (They need a certain number of infections in a specified amount of time for our insurance to authorize them.)

The question was, when he’s under anesthesia for tubes, should we go ahead and remove his tonsils and adenoids too, as they are likely the cause of his obstructive sleep apnea? The short answer is no. The long explanation is this: We had his sleep study redone a week or two ago, and the results came in this week. He has outgrown his central sleep apnea (where the brain “forgets” to have him breathe), which is excellent news! He does, however, still have mild obstructive sleep apnea. The threshold is five episodes (of stopping breathing) per hour, and he had 7.6. So he’s not at any real risk, but he’s still past the threshold of “normal.” Also, the level of oxygenation during sleep should stay above 90%, and his dropped into the 80s a few times. But, it wasn’t often enough or for long enough to be dangerous. Thus, he has “mild” obstructive sleep apnea. What this means is that there’s no risk of fatality, but he may have some cognitive issues due to the lack of quality sleep—and as he gets older, he may have behavior issues associated with it. Nothing major—just sort of the general “my kid doesn’t get quality sleep, so he’s cranky and combative and doesn’t think quite as sharply as he might with better sleep.”

So, the sleep doc suggested we follow up with an ENT and see whether she wanted us to consider tonsillectomy/adenoidectomy as a treatment. And the ENT confirmed that Sam’s tonsils and adenoids are on the large side and are likely the cause of the apnea, but because there is no danger to him right now, she doesn’t recommend removing them until he’s at least three years old. The reason is, the surgery is brutal for kids (and worse the younger they are), and there are some risks due to his Down syndrome. Mainly, it’s the level of anesthesia that causes a risk—for ear tubes, they simply hold a mask over his mouth while the doctor performs the 5- or 10-minute procedure. For T&A surgery, Sam would have to be intubated. And putting a tube down his throat requires extending his neck, and some kids with DS have a condition called atlanto-axial instability (AAI), which is basically an issue with the (cervical??) spine. They X-ray for it around two years old, I believe, so at this point we don’t know whether Sam has it or not. If he does, intubating is a delicate procedure. If he doesn’t, then intubating is like it would be for any other kid. But because we don’t know, it’s just not worth the risk. (His chiropractor, by the way, treats him as if he has AAI, just to be safe. Better safe than sorry!)

Plus, kids of Sam’s age very often end up in the hospital on IV fluids after T&A surgery, because they refuse to drink and they get dehydrated. And hemorrhaging is not uncommon. So for all of these reasons, unless there is a really compelling reason to remove the T&A, they recommend waiting until he’s at least three. The doctor basically said, “If you can deal with a couple more years of sleepless nights, I’d wait.” And yes, I can. Especially because Sam’s sleep has actually improved of late (though now that I’ve said that, I’m sure he’ll go on an “up all night” bender!). He’s now only waking up twice a night most nights, and he gives me a nice four- or five-hour block of sleep between about 1am and 6am. So I can deal with that, if it means avoiding major surgery. Though I have to say, I’m very relieved that I never subscribed to the “you need to let him scream it out so he learns to sleep” theory. Knowing now that his sleep problems are due to a physical condition, I would’ve felt like a total bully if I had done that!

Let’s see…what else is new? I found a solution to a problem that has been worrying me for months, so that’s a load off my mind! You see, Theo’s kindergarten gets out at 11:30 a.m. every day, and it’s a good 20-minute drive to/from the house at that time of day. And the problem is, that’s when Sam naps. He normally goes to sleep at about 10:30 in the morning and sleeps until about 12:30. And I’ve been trying for months to push his nap out to later, knowing that I was going to have this 11:30 pickup. But I’ve had no luck at all! Sam is just a creature of habit, and when he’s tired, he’s tired. Even keeping him awake until 10:30 is a stretch sometimes! So what was I to do? I could put him down around 10, and he’d only get an hour nap before I’d have to wake him to go get Theo. Which means I’d only get an hour of work time and, worse still, Sam would be exhausted later in the day. (He won’t take afternoon naps in his crib—I’ve tried many, many times, and it’s a no-go every time. It’s morning or bust!) And I’d be working every night because I wouldn’t be able to get anything done during the day.

The other option would be to try to stretch Sam out to noon and put him down for a nap after picking up Theo. But I can guarantee he’d fall asleep in the car on the way to school and get a 20-minute nap, which would then mean no nap later. Both of my kids are the type that if they get a quick catnap, they think that’s all they need for the day.

So, I was stuck between a rock and a hard place. With either option, Sam gets a lousy nap and will be tired and grumpy, and I won’t get enough work time, so I’ll be working nights (and never seeing Chris, which would stink). But Theo needs to be picked up at 11:30, as after-school daycare doesn’t start until 1:30 p.m., so it’s not an option. Hmmm…

After months of pondering how to handle this, I finally decided the only solution that would accomplish all three goals of (a) picking Theo up from school, (b) getting Sam a good nap, and (c) giving me some much-needed work time each day was to hire a babysitter who could pick Theo up and watch him for a couple of hours. But who?

As it turns out, I’ve found a local woman who does part-time nanny work so she can stay home with her twin sons (who are 2). She watches another little girl a few hours a week and then another little boy on occasion. She lives fairly close to us and is happy to pick Theo up, take him to her house, give him his lunch, and watch him for a couple of hours a few days a week. And, her price is quite reasonable. So, Theo, Sam, and I met her this week, and she seems great—very nice and down-to-earth, and her house is like a kid’s heaven, with all manner of indoor and outdoor toys. (It actually looks like an in-home preschool, she has so much stuff.) Theo really liked Liz and keeps nagging to go back to her house, so I think we’ve found our solution! I contacted the other woman she nannies for, and the woman gave her a glowing review. So, we’re going to try three days a week, just about two hours a day. The other two days a week, Chris will be working from home and can either pick Theo up on his lunch break or stay home with Sam so I can pick him up. The funny thing is, Theo has wanted to go to daycare for well over a year—many of his preschool friends go to daycare, and he thinks it’s an exciting, glamorous place. So I think he’s actually excited about the prospect! And, as I said, Liz has all manner of fun toys and two little boys for him to play with.

The funniest part was, Theo interrogated Liz when we met her. You would’ve thought he was interviewing her. Click here to read a transcript of her interview. 😉

Anyway, this is a load off my mind. I think the biggest challenge of having two kids instead of one is just trying to balance whose needs get met when. And in this case, getting Sam a consistent nap trumps me being the one to pick Theo up from school every day. Lucky for me, Theo doesn’t seem to mind in the least. And I’ll be the one taking him every morning, plus volunteering in his classroom, so I don’t feel like an absentee mom!

Speaking of my work time, which is an added bonus to Sam getting a daily nap, things are going well. The company who filed bankruptcy may actually be paying me, though I’ll believe it when I actually see the money in our account! But in the meantime, I’ve picked up a couple of new clients, and I’m liking them a lot. So I think I will be very selective as to what work I accept from the Chapter 11 company and will perhaps focus more on these new clients. They pay a little better and aren’t in the midst of bankruptcy restructuring, so, you know…they feel a little safer. 😉

And things are going well with UC Berkeley Extension! I’m teaching an in-person class in the fall, as I think I’ve mentioned, but I just found out that I’m actually teaching in a UC Berkeley classroom! I thought I was going to be teaching at the Extension offices (which are about half a mile off campus), but no—I’ll be teaching on the Berkeley campus. Which makes me feel very big and important—HA!

I’m also teaching an online class in the fall, and I’m teaching two online classes in the spring—the substantive editing one that I’ve been teaching, as well as a copyediting one. I’m really excited!

As for Chris, he’s just enjoying the last few weeks before his insane mega-project kicks off and life gets crazy for half a year!

I hadn’t gotten out much in a few weeks, other than for doctor and therapy appointments, so I requested that we leave Clayton this weekend. I love Clayton, but sometimes it’s nice to get out! So, on Saturday morning, we decided that after Theo’s soccer game, we’d head over to Sausalito, to the Bay Area Discovery Museum. It’s one of our favorite memberships—we love that place! The cool thing is, Sam can play there now, too. Obviously, what he does is very limited, but there are tot areas where he can play, which is really fun. And there’s lots of stuff for Theo’s age, too. One of the neatest things was watching Theo enjoy story time. For years, we couldn’t get him to do any sort of story time—he wouldn’t sit still for long enough. But on Saturday he sat and listened attentively to three straight story books—amazing!

I shouldn’t be surprised, though—his attention span for books has gotten much longer. I’m now reading him a chapter book at night, and he looks forward to it a lot! We started out with an elevator book that Auntie Jeanette got him, and now we’ve moved on to Charlie and the Chocolate Factory. I had forgotten how good that book is! Theo loves these nightly chapters so much that he actually volunteers to go to bed at 6:45 on the nights I hold my class chats (at 7) rather than missing out on his chapter for the night. Go figure…

Soccer was…interesting…this week. We noticed Theo doing a lot of pushing and tackling other kids, which isn’t like him. Chris took him aside and explained that tackling is not part of soccer and he wasn’t to be pushing other kids, but we still weren’t sure why he was suddenly doing that. And then I lined up with him at the end of class (when the coach gives a short wrap-up talk), and Theo announced very loudly, in front of his teammates and their parents, “At Gavin’s soccer game, people know how to pass. These kids DO NOT know how to pass the ball!” And he pointed with great emphasis at a couple of kids. Oy vey, I was somewhat mortified as I said calmly, “Theo, everyone is here to learn. You’re all still learning to pass the ball.” Good grief, I have the butthead kid who tells the other kids they don’t know how to play! Okay, he’s not really a butthead, but he sounds like a butthead. In reality, Theo is just so focused on rules when he learns them that he sees them as black-and-white absolutes. So when the coach teaches the kids to say “pass!” when they want the ball, Theo expects that if he says “pass,” they’ll immediately pass the ball to him. (At Gavin’s soccer, as he calls it, the “kids” he’s talking about are actually teenage volunteers who do indeed pass him the ball when he calls for it.) And of course, these kids, being four and five years old, want to keep the ball for themselves, so they don’t pass. Which evidently irritates Mr. Rules Police. Ah well, we had a talk about learning and being understanding when others are still learning. We’ll see how it goes next week. Perhaps we need to move him up to the next level, though I doubt passing will be much better at that level. I started soccer in first grade, and it was years before people consistently passed the ball. It’s just kid-nature to get the ball and think, “I got it! I’m going for the goal!”

Another example of Theo’s strict adherence to the rules, by the way, comes when he wants to know when a guest will arrive. If Grandma and Papa are supposed to arrive at, say, 11:30, and they aren’t there right at 11:30, he gets very stressed and repeatedly asks why they haven’t arrived. The simple answer of, “They’re running late. They may be stuck in traffic” does not do. I’ve tried explaining the concept of about 11:30, as opposed to right at 11:30, but he doesn’t get it. 11:30 is 11:30, and if I utter the words “11:30,” the person darn well better arrive by then. So, knowing this about Theo, I now tack 30 to 60 minutes on to whatever time I think the person will be arriving. That way, if their actual planned arrival time comes and goes, he’s none the wiser. 🙂 (If they arrive earlier than he expects, he’s too excited to see them to notice the discrepancy in time.)

Speaking of Grandma and Papa, they came for a visit on Sunday, and that’s how we wrapped up our week! They enjoyed watching Theo demonstrate his swimming skills in the pool—he was so proud to show them! And we had a yummy dinner out on the patio in the backyard, after Sam got to show off his pool skills in his wading pool (which Theo refuses to go in because “Sam puked in it a couple days ago”—ha!)!

Anyhoo, time for me to wrap up. I’ve got a video and an image gallery for you this week! The video is of Theo’s swimming and a Sam milestone. Enjoy!

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