May 4, 2014: Success!

Happy May! We’re kicking off May on a positive note in two ways! First, no one in the house is sick. Well, not really, anyway. I decided to eat a couple of tablespoons of bottled salad dressing on Friday night, and I’ve been paying the price ever since. Clearly, xanthan gum (present in most commercially made salad dressings) is still not my friend. Ugh. But aside from my own foolishness, we are all healthy and well!

But the real success this week is a parenting win. You see, I am far from a flawless parent. In fact, I often feel rather inept. For example, I have yet to find a school situation that really works well for Theo. He’s doing okay where he is, but there are a lot of challenges, and it’s not the perfect fit I had hoped for. And a nearly daily basis, I’m reminded of how I just can’t figure out what makes that little guy tick well enough to anticipate things that will cause him stress or make him anxious and to help alleviate that anxiety. And Sam’s eating—that’s been a struggle for more than 18 months, and I feel hopelessly inept that I, as his mother, can’t even figure out how to get him to eat better.

And really, I know this is normal. I think any parent feels inept at times. If they say they never have a moment of self-doubt, I’m pretty sure they’re not being entirely truthful. 😉 But it’s nice to have those moments where you can sit back and think, “We did the right thing!” And we had one of those this week.

So…Sam’s thyroid. I’ve talked a fair bit lately about our concern that he has subclinical hypothyroidism and the fact that we decided to go out of pocket and get a second opinion outside of our medical/insurance group. And our second opinion, a naturopathic doctor working out of Portland, ran some further tests and indicated that Sam would benefit from treatment—despite our medical group saying they did not want to treat him. So, whose advice to follow? The naturopath’s comments made a lot of sense to us, and based on those, as well as the outside research I had done, and feedback from other parents of kids with DS (plus just knowing our own son and his symptoms), led us to decide that we were going to try the treatment route.

But it was a somewhat scary decision. Not scary because the treatment is experimental or something—on the contrary, it’s been around for nearly 100 years. Just scary because whenever you think about lifelong medication for your child, it’s a scary step to take. And going against the advice of our conventional medical group was a little scary for me, too. Because I know people who think they know better than doctors, and I’ve seen what a negative effect that can have. And I didn’t want to be one of those people! Because the truth is, I don’t think I know better than doctors; I simply think that our medical group has a very narrow definition of how they treat a condition that has a lot of gray areas, and I wasn’t sure their definition was the most appropriate for our son.

So anyway, we discussed it, and we took the leap. And now, Sam has been on the medication for three weeks. In the past three weeks, he has not only started to walk, but he is making leaps and bounds in his walking progress! He has started to drink from a sippy cup. He is trying to say more words—just this past week we’ve thought he tried to say “up,” “down,” “book,” “this,” and “that.” And we’re certain he’s now saying “hi”—he says it to pretty much everyone he passes, which is quite sweet. He’s making more complicated babbling sounds—combining different consonant sounds in his babble. He’s signing umprompted a whole lot more—regularly asking me to open things and making various other signs to communicate his wants and thoughts without us prompting him. He’s eating like crazy and appears to be growing taller—and hopefully putting on a bit of weight (finally!). He cutting at least two teeth, possibly three—after nearly a year of no teeth erupting. And his play has become markedly more mature—instead of just running cars along the ground (which he still loves to do!) and banging things to make noise, he’s doing pretend play (pretending to wash his hair, pretending to dress himself), trying to help undress himself, and imitating things his brother does (which is a mixed bag—HA!!).

We can’t say for sure that all (or any) of this has anything to do with getting his thyroid working better, but wow…it’s amazing, and it sure makes us think that the treatment has something to do with all of these exciting developments. I can’t even begin to tell you how happy it makes us to see him doing so well! And we breathe a big sigh of relief and say, “Thank god our gamble worked—or at least didn’t do any harm!” Parenting win. 🙂 I like getting those every now and then. For a look at his walking progress, check out this video:

As long as we’re on the subject of Sam, I had his IFSP (Individual Family Service Plan) meeting with his Regional Center case manager this week. It’s kind of a pointless meeting where they just re-qualify him for services, but that’s fine. So anyway, she came to the house to ask me a few questions about his progress, but it turned out that I didn’t even have to attend the meeting. Why? Because Theo took over and did it for me. It was actually pretty hilarious, and the case manager got a total charge out of him. She has a five-year-old son, and she was shocked to hear that Theo is only six, because he converses like an old man. Yup, pretty much. 🙂 Anyway, Theo, who was eating a snack while she was talking to me, jumped in and started providing an incredibly detailed update on Sam’s progress. He rambled for probably 20 straight minutes and covered a multitude of subjects. It went something like this: “Sam’s doing quite well with all of his therapies. He’s saying about a hundred million words now. He has lots of signs, like a million. He eats squeeze packs. He likes the coconut milk ones, but I don’t. I more like the fruit ones, because they have a bit of soy milk, and I like soy milk better than coconut milk. Sam goes to We Care. He’s doing great. He does great going potty in his diaper. He has no problems with diarrhea….” And on and on (and on and on). By the end of his monologue, he had actually covered pretty much everything she wanted to know, so I really didn’t have to do much but sit there and listen to him ramble on about his brother! Funny guy…

That actually took place after a three-hour swim date with his new gal pal, Ella. She’s his new lady love in his kindergarten class, and he informed me this week that they’ll be getting married. And everything is “Me and Ella this…” and “Me and Ella that…” Good taste, once again—Ella is very sweet and fun and smart. And I like her mom, so I give them my blessing. 😉 I assume the play date went well, because when I went to pick him up at Ella’s house, she opened the door and announced, “I don’t want Theo to go home!” Ella’s mom actually told me not long ago that Ella told her Theo is the funniest kid in class. She’s the second mom to tell me her child has reported that, so I suspect my kiddo may earn the prestigious title of “Class Clown” someday. Why am I not surprised?! 😉

This weekend the weather was lovely, so we did outdoor things. On Saturday, we drove up to Davis to wander around their lovely Arboretum. We have a really nice Arboretum closer (in Berkeley), but it’s not free, so we decided to take a day trip to Davis. (Free is the name of the game as we get ready for our big trip!) Besides, Chris and I have a soft spot for Davis, given that we fell in love there. 🙂 The boys had a good time walking around the Arboretum (well, Sam drove his little car) and a bit around the UC Davis campus, where Theo felt like hot stuff being on a college campus. We also walked around downtown Davis a bit and got Theo a new bike helmet to replace the one that he smacked on the pavement a couple of weeks ago. The guy at the bike shop was rather shocked by the size of Theo’s head—Theo needed an adult-size bike helmet because his noggin is too big for the kid ones! I restrained myself from saying, “Yeah, his head is as hard as it is big!” 😉

The only slight problem on Saturday was that Theo woke up itching like crazy from an eczema rash, so we gave him a half dose of Benadryl so he could get some relief. This was somewhat lovely for us, as it made for a rather mellow kid, but it also made him a bit sleepy for walking around!

Side note: When we have more disposable income, I’m seriously considering taking Theo to my naturopath to see what she thinks about this eczema. Kaiser’s answer is to just slather him with large amounts of steroid cream, and it doesn’t seem to work—plus, I’m not crazy about using a lot of it, because I’m told that prolonged use of it can thin the skin. Seems to me we should try to find the root cause instead and address that. And for both Sam and I, for things Kaiser hasn’t resolved, we’ve had good luck with naturopaths. So…I just may take him one of these days and see if we can get some answers that way. Poor kid is itchy so much of the time. 🙁

Anyway, back to the week’s news. On Sunday we stayed local, did a few errands, went to the park, and then walked to the Art & Wine Festival in our little town. They actually have a pretty big kids’ area at the Festival, so the boys had a good time. Chris and I split a half-glass of wine (the wine was expensive, so we were being cheap—otherwise we might’ve split a whole glass—gasp!), and Theo completely cracked up the man serving the wine. I think I’ve mentioned that Theo is somewhat obsessed with beer and wine, so I knew he’d want to go up to the booth with me. He loves ordering for me (I sometimes let him order my coffee at Starbucks), so he strode right up to the booth and said, “Hi, how are you? What kind of wines do you have?” The guy looked at him, tried not to laugh, looked at me, then looked back at Theo and said, “Well, today we have Chardonnay and Cabernet Sauvignon.” “Okay,” Theo replied, “My mom would like a Cabernet Sauvignon, please.” I corrected the order to be a Chardonnay, and when the man handed me the glass, Theo asked if he could smell it. (Theo actually doesn’t know people smell wine—he just asks to smell everything. Cooking with him is a long ordeal because he likes to smell ever single ingredient!) The guy started laughing and said, “He’s going to be a future wine snob!” Indeed… 🙂

It’s your lucky day—I have a second video for you! Sam’s favorite pastime is to body-slam Theo at every chance he gets. I managed to catch it on video today!

One last thing. You’ve heard me speak on here about the “Rockin’ Moms”—that’s the Facebook group of 140 moms of kids with DS that were born in 2012 or 2013. Well, one of the Rockin’ Moms posted an Instagram picture of her son, and some Internet troll found it and posted a comment that her son was “ugly.” She wrote an open letter to whoever the troll is, and it was published on Huffington Post. And in fact, it ended up going viral—it showed up all over Facebook and in online newspapers all over the U.S. and even across the pond in the UK. If you want to read a story about it posted in the London Daily Mail, click here. So proud to count this awesome mama and her beautiful son as friends! And to the nasty people and haters out there—never mess with a Rockin’ Mom! 🙂

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