Well, the big day finally arrived—our Signing Time concert! As I think I’ve mentioned on here, Sam is a huge fan of Baby Signing Time, a set of four DVDs designed to teach babies sign language. When I had Sam, one of the first things people in the DS community told me was, “You’ve got to get him Baby Signing Time! My kid loves those videos and has learned so many signs from them!” Kids with DS often talk later than typically developing kids, due to lower oral muscle tone and differences in the physical structure of the mouth. (It’s smaller than typical, but the tongue is often typical sized, making it relatively “large” for the size of the mouth. Know how hard it is to talk when you’ve had Novocain and your tongue feels too big for your mouth? Same idea, I think.) This is not a universal truth, of course—there are kiddos with Down syndrome who talk as early as any kid. But a vast majority start talking later than typical children. Sam is a member of that large majority, so I’m a big fan of anything that helps him communicate with us in any manner!
So…enter Baby Signing Time. I showed the videos to Sam a few times before he was about 20 months, and he wasn’t overly interested. But when he turned about 20 months old, he was suddenly riveted. And now he’s an official Baby Signing Time junkie. And he has learned so many signs from them! I recently had to write down a list of the signs he can do for his Early Intervention teacher, as I had told her he knew about 25 signs, and she wanted to be able to watch for them and use them with him. Um…no. I was wrong. When I started writing, I realized he knows close to 50, and uses them fairly regularly! Thank you, Baby Signing Time! We sign with him too, of course, and Theo actually teaches him new signs sometimes, which is awesome, but the biggest heap of credit goes to the Baby Signing Time videos, which he studies intently and will imitate.
And actually, they’re pretty cute/catchy videos. I don’t mind him watching them at all, because I kind of like the little songs, and they’re cute videos and not irritating like some kids’ programming. I find myself singing along frequently.
So, when we heard that Rachel Coleman, the host and creator of Signing Time and Baby Signing Time, would be doing a benefit concert in South San Francisco, of course we had to go! (By the way, Signing Time is the big brother of Baby Signing Time—same idea, but for older kids. Sam isn’t interested yet, but I’m sure he will be as he gets older.) Chris wasn’t too excited about the idea of spending the day at a kids’ concert, but when I told him a locally famous grilled-cheese food truck would be selling food after the event, he was in!
My friend Jisun and her husband and kiddos also attended, so we got to hang out with them, which was lots of fun! Her oldest daughter is Theo’s age, and Jisun and I are convinced they will get along well if they ever do more than just stare quietly at each other. (For the record, Chris and Jay took the kids over to the bouncy house at one point, and Chris told me Mina and Theo talked a lot more after bouncing together. Hmmm, perhaps the ice has finally been broken, the mutual shyness overcome!)
The concert itself was fun, although I would’ve liked more songs. Rachel did a lot of talking about herself and about projects she’s working on, which didn’t particularly hold the interest of the young kids there. But when she would launch into a song, Sam was completely rapt! He would sign along sometimes, bounce on my lap, and clap and do his happy squeals. So I’d say it was a success. Meanwhile, Theo, who really wasn’t overly interested in the event, ended up having fun getting his face painted like Spider-man, bouncing in the bouncy house, and doing some of the little activities they had set up in the carnival area.
We also met a birthday buddy for Sam! A little girl named Libby, who also has DS, came up to see us with her mom, and it turns out that Libby was born just one day after Sam!
And if you’re curious about the grilled cheese, it was delicious! Though I have to say, Theo’s Indian food was actually even yummier. Theo can’t have most cheese and we try to keep him away from gluten, so the grilled-cheese truck wasn’t happening for him. His other options were a Mexican food truck and an Indian food truck. He quickly chose Indian, and Chris got him some samosas and some sweet-potato fries with an Indian sauce. He loved the samosas, which surprised me because they were slightly spicy! Very yummy, though. It was a huge portion, so he couldn’t eat them all…and Chris and I happily helped. 🙂
I also got a picture of Sam and I with Rachel and Hopkins, her amphibious sidekick who appears in Baby Signing Time and Signing Time. I love how it turned out—you’ll see it in this week’s album!
The concert, by the way, benefited Down syndrome cognition research. It happened to fall on the day after World Down Syndrome Day, so it was fitting! And what did we do to celebrate WDS Day? Did we go to the park for our local group’s gathering? No, I wish… Instead, I went to the dentist and got four cavities filled. Oh, and Chris and I dealt with a stolen credit-card number and some fraudulent charges on our account. Big fun. By the way, I do not recommend having four cavities filled at once. I had them in three different areas of my mouth (both upper sides and the lower left), so only the lower-right portion of my mouth was untouched. OUCH! So…much…Novocain! And when it wore off…so…much…discomfort! Not fun, not fun. The dentist had advised two appointments for this, but I had pushed for doing it all in one so I didn’t have to have Chris take off work and watch the boys on two separate occasions. Hmmm, perhaps not my best idea. Oh well, at least it’s all done now.
Let’s see…what else did we do this week? Oh, I had a phone appointment with the naturopath who runs the Down syndrome clinic up in Oregon. Wow, what a ton of information I got! We talked for two hours, and she gave me so much information! It was pretty science-y, because her background degree is in biology, and she teaches biology and anatomy and physiology at a university. So although she practices naturopathy, which is a more natural approach to wellness, healing, and medicine, her work is very grounded in scientific research. Being a really logic-driven person, that appeals to me. I’m a real mix of “granola” (i.e., kinda hippie-ish) and scientific, so I’m comfortable with a mix of conventional medical practices and alternative treatments. I’m skeptical that doctors are always right, but I do recognize and respect that years and years of science and research have gone into what informs their decisions. So for that reason, naturopathy is a comfortable place for me. It combines the best of both worlds, in my opinion. One thing that bugs me about conventional medicine these days is that the trend is to wait for real problems to crop up before addressing anything. And while I don’t think there’s much value in chasing every little potential problem, I do think that addressing certain areas of concern before they develop into more serious problems is wise.
Such is the case with Sam’s thyroid. As I mentioned on here recently, the medical community is split on how to treat subclinical hypothyroidism, which is what Sam has—one number (his TSH) is out of the normal range (somewhat significantly), whereas another number (his Free T4) is okay. So yes, they acknowledge that there is a concern with his thyroid function, but they choose not to treat.
Some doctors feel that you also need to look at T3 and Reverse T3 numbers to determine whether treatment is warranted. Others say, “T3/Reverse T3 is irrelevant. We only look at TSH and Free T4.” That is Kaiser’s stance…and it’s one I’m not terribly comfortable with. So many of Sam’s little buddies have doctors who look at the T3/Reverse T3 that I feel like by not looking at it, we may be remiss. The naturopath is in the “we need to see what T3 and Reverse T3 are doing to make a decision about treatment” camp, and I think that’s the camp where I’m more comfortable. I want all the information, not just the snapshot.
In addition, we talked about a few other areas of concern—namely, Sam’s lack of growth, the fact that his urine output is very low, the fact that his iron levels are low, his chronic ear problems, his often-snotty nose, etc. The short answer is that all of these things are often dismissed as just “Oh, that’s a Down syndrome thing.” And it could be…but they can also be indicative of other issues. So, before simply considering it “a Down syndrome thing,” it seems wise to make sure there’s not a different underlying cause. The naturopath mentioned that he could be experiencing silent reflux, given that he had reflux when he was younger and it’s pretty common. That could explain the chronic ear issues—evidently acid can back up all the way into the ear tubes and cause inflammation. Same thing with the nasal passages, which may explain why he’s so frequently congested. She suggested we raise one end of his bed again and see whether we notice any improvement. The slight problem with this is that he moves so much during the night that he may end up with his head going downhill, which would just make things a bit worse. But it’s worth a try—he may automatically try to keep his head “uphill,” so to speak, and if he does it could help with reflux.
So, some of these other issues can be caused by thyroid problems, issues with celiac disease, reflux, and so on. She recommended some bloodwork to check all the thyroid values so we can see exactly how his body is working thyroid-wise, as well as to check adrenal function (to check for dehydration, given that he won’t drink much of anything other than nursing) and to check for celiac issues (because it’s pretty common in kids with DS, and given that I became gluten-intolerant while pregnant with Sam, it’s a possibility). Sam hasn’t shown the poop-specific signs of celiac, but it’s somewhat common, as I said, in kids with DS, and he is a very “rashy” baby, which can sometimes be related to problems with gluten.
So we’ll check those things and see where we’re at. Lucky for Sam, it just means a simple blood draw. And while I’m not in the habit of turning my children into pincushions for no good reason, I do think there is reason to look into things a bit further before simply declaring, “It’s a Down syndrome thing.”
By the way, in case you’re wondering, this is not the same naturopath I went to, and there’s one simple reason for that: This naturopath specializes in treating patients with Down syndrome. In fact, her own son has DS. So obviously, she has a vested interest in treating people with DS. 🙂 I actually really liked my naturopath, too, but given how that extra chromosome can be a tricky little thing, I figured I might as well talk to someone who works with it every single day. Plus, a couple of moms in my favorite DS group have consulted this naturopath and had very good things to report.
As long as we’re talking about naturopathy, by the way, do you want an update on my gut? Of course you do! Who wouldn’t?! 😉 I’m happy to report that it’s doing excellent! As long as I don’t eat the foods that inflame it, I am healthy and happy. And if I want to cheat and have gluten (say, a grilled-cheese sandwich!) every once in a while, I can take a GlutenEase and I generally have decent results. I’m certainly not going to dive back into the gluten world headfirst, given how long it took me to heal my messed-up digestive system, but it’s nice to be able to cheat now and then! And I do credit my naturopath with helping me finally heal. I’m glad I consulted my medical doctor, because it was during the colonoscopy that they found and removed a sizable precancerous polyp, and I’m certainly glad to be rid of that little beast, especially given my strong family history of colon cancer. But my naturopath is the one who really looked deeply into things and said, “Here’s the problem. Your gut is terribly inflamed, and this test shows you have no good bacteria left in it. We need to get the inflammation down first, and here’s how to do it. Then we need to repopulate with good bacteria to help you heal and digest, and here’s how we do that.” And it worked! Thank goodness. Because even though my medical group blew me off and said it was fine to have near-constant diarrhea for well over a year, I’m pretty sure it’s not a good thing long-term to have that constant irritation to your insides! I feel like a healthy, working gut is a good thing, and I’m quite grateful that, with help from both my medical doctor and my naturopath, I finally achieved that. So thumbs up for mixing treatment options and finding things that work…which is exactly what I hope we’ll be able to do for Sam!
As long as we’re on the subject of health, I’m still obsessed with my Fitbit and my Couch-to-5K program! My knees are not such fans of the Cto5K, but the rest of me is. And a good friend of mine who did the same Cto5K program told me that around this time (Week 3-4), she, too, had terrible problems with her knees, but she continued on and the pain subsided. So I shall press on! Actually, one of my knees is already improving; the left one feels decent, and only the right one is still screaming. And my right leg is my more “affected” leg, so that probably has something to do with it. (I was born with something called “double tibial torsion,” which means my legs twist back and forth in ways they’re not supposed to. Supposedly it makes running a slow, laborious process for me. I don’t know about that—I’m slow, but is it from the torsion? Who knows?—but I do know that my right leg twists inward far more than my left does. My right leg is the one that grosses Chris out when he looks over at night and I’m relaxing with it in some weird, contorted position. To me, it’s perfectly comfortable and natural. But to Chris, the human leg doesn’t bend and twist in that way. It gives him the heebie-jeebies!)
Anyway, here I am on Week 4, and on Wednesday I’ll begin jogging in five-minute intervals. I shuffle along like an old lady, and I think my walking pace may actually be faster than my jogging, but I’m doing it! And I’m not getting the funky cardiac stuff I used to get when I jogged. I think the reason is, I’m strictly following the guidelines in the app, and slowing to walk when it says. I have a tendency to jump into things 150%, and in the past when I’ve tried to jog, I think I’ve tried to do too much, too fast. Now I’m doing it exactly as the app suggests, and I think that’s helping me slowly work up to jogging more without overexerting myself.
Chris isn’t interested in jogging, but he’s walking almost daily, and both he and I have lost three pounds already! I think a big part of it, too, is the darn Fitbit letting us know when we’re reaching our caloric limit for the day. 🙂
So, for our date on Sunday (our friend Roxann watched the boys for us), we splurged on a sushi lunch that wouldn’t kill our diet for the day. Mmmm, so yummy! We also picked up a few supplies for Theo’s birthday party next weekend. It’s a “Mad Science” party, so we have an outfit called Mad Science coming out to do a hands-on science show and experiments with the kids. I’m also setting up some experiments of our own for the younger kids (because the show is designed for kids Theo’s age, and we’ll have some littler ones around, too), and I’ve got some ideas for fun foods. It’s after lunch, so I’m just doing snacks and cake, but we’re going to have a fruit “build-a-molecule” station, a yummy punch with a Jell-o brain floating in it, and a cake shaped like a chemistry flask and with “steam” coming out of it (either cotton candy “steam” or dry ice if I get ridiculously ambitious). I have a feeling that the cake will turn out to be like one of those “Pinterest fails,” where you have this great model that you try to re-create and it turns out looking like a pile of sludge, but I’m still going to give it a go. You’ll get to see the results next weekend. 😉
Speaking of Theo, I figured out what we’ll do with him over the summer. We’re shipping him off to Siberia. Okay, just kidding. Although with today’s attitude, I’m tempted! (Evidently he’s five going on fifteen these days…sigh….) No, actually, in addition to swim lessons every afternoon for six weeks, I signed him up for a day camp through the local “enrichment center” at an elementary school near here. His best friend goes there after school and loves it, and he’ll be in the summer program with Theo. The price is reasonable, and they do a lot of fun activities. Every week there’s a field trip one day, a trip to the park for a picnic one day, a swimming day (trying not to be nervous about that one! He’ll be wearing a life vest so I don’t pee my pants worrying about him, given that he’s not a super-strong swimmer yet), and various other fun activities. In fact, I think he’s going to have so much fun that he won’t want to go back to school!
There is one drawback to this camp: Because a lot of days involve things like picnics and field trips, I know he’s going to get a lot of gluten. And gluten doesn’t do great things to his behavior. But it would be nearly impossible to keep him off of it, and given that it’s not a health concern, I feel like I should just let it go. They already know they can’t give him dairy, since that’s a health issue…but the gluten is more just a behavior thing. I don’t want to limit them too much, you know? And limit him too much—if he’s the only kid who can’t eat the Burger King lunch when they walk there, he’s going to feel sad and like an outsider. I don’t want to do that to him. So I’m going to ease up and just deal with the gluten fallout for seven weeks. Eeek. But the other option was to keep him home over the summer, and he would end up watching a lot of TV while I work and while Sam naps. I decided I’d rather deal with gluten intake than turn my kid into a TV zombie, so…you know, choices… (And no, keeping him home and not letting him watch TV isn’t an option. I have to work over the summer, and Sam has to nap, so TV would be a part of the day if he was home—it’s the only way to keep him quiet while Sam naps and I work.) He may come home all glutened-up, but he will have been outside and playing and having fun with friends all day, and I’ll take that over sitting in the house playing with the iPad or watching TV every day.
We’re taking August off, though. Well, me and the boys. Chris has to work for part of it, of course. But I planned our annual vacation this week—we’re going to Seattle! We were going to go to Cambria again, and part of me will miss our quiet little hamlet there. But we decided to switch things up and go to Seattle instead. For one thing, Auntie Lisa, Uncle Chris, and Cason are there! And for another, there is a ton of stuff to do with the boys up there. And actually, our rental house there is less expensive than the one we rent in Cambria, so that’s a nice plus. However, it’s a two-day drive each way, so the extra money will just go to hotel stays each direction. But that’s okay—at least it’s a break-even. And Theo will be very excited to stay in a hotel on the way there/back!
At the moment, we’re thinking of stopping in Portland on the way up and spending two nights there, so we can see a friend of Chris’s. On the way back, we’ll probably spend just one night in Medford or somewhere in southern Oregon. We’ll have the dogs with us (dog boarding would break the budget!), so it’s not like we can do a ton (can’t leave the dogs in the hotel room), but there are options. Chris’s friend used to have a pug (and has a couple of other dogs), so I suspect they’ll be cool with us stopping by with the dogs. 🙂
Anyway, ask us how wise this plan is after we do a 12-hour drive with both boys (albeit split into two days). We may tell you that we were truly insane. But if we survive with our sanity intact, I’m sure we’ll have fun! We’ll be going in mid-August, but I’m going to keep Theo out of summer camp for all of August, so he gets some do-nothing time before he’s back in school. Some hanging out and relaxing at home, watching TV and chilling out is fine—I just didn’t want him to have 10 straight weeks of it! (In case you’re wondering, Sam’s Early Intervention program goes through the summer. They just take two weeks off in August.)
Whew! Long blog this week! Well, I leave you with a cute video of Sam signing along to “Slippery Fish,” a bunch of pictures (including some from last week’s trip up Mt. Diablo), and an exciting bit of news! You know the book Chris and I contributed to? The one about parents who have received a Down syndrome diagnosis? Well, the website (www.missionT21.com) has been live for just over a week, and we’ve already had 10,000 hits from more than 10 different countries. And of those 10,000 hits, 3,000 are unique users—meaning at least 3,000 different people have visited our site! Awesome, awesome, awesome!
Also, if you missed it, I had a surprise midweek blog post in honor of World Down Syndrome Day. ‘Tis here.
Happy beginning of spring, everyone!