Apr 13, 2014: The Crap and the Good Stuff

Well, what a week of ups and downs this has been! If I share our week’s events sequentially, you get to hear about some of the most super-fun stuff right up front, and then you get mired down in the crud. That’s no fun, so I think I’ll tackle the crud first. Get that out of the way and then share the high points of the week! Ready for the crud? Here goes…

First bit of crud: Sam’s bloodwork came back, and he does need thyroid medicine. Well, “need” might be a strong word. Let’s say “would benefit from” instead. As I’ve mentioned, treatment for subclinical hypothyroidism is an inexact science that doctors don’t all agree on. However, the majority seem to feel that treatment is warranted, and so since our medical group does not follow that guideline, we stepped outside our medical group for a second opinion.

So here’s the lowdown, for those of you interested in the science-y bits. There are several measurable factors that make up thyroid function: TSH, Free T4, T3, and Reverse T3. Kaiser, our medical group, only tests TSH and Free T4. They feel T3 and Reverse T3 aren’t indicators that they need to examine. Fair enough, but many other medical providers feel differently. Sam’s TSH has been high (and getting higher) for some time. Further, he has a lot of symptoms of hypothyroidism—to name just a few, slow growth (he has barely grown in a year—hasn’t put on any weight and hasn’t grown much in height), delayed tooth eruption, orange skin, dry skin…the list goes on. However, because his Free T4 value was in the normal range, Kaiser opted not to treat. Fine, but given what I know about T3/Reverse T3 and the fact that many doctors feel that’s important to look at, I wanted to know the bigger picture. And Chris agreed with me.

So, the naturopath we consulted in Portland, whose practice is focused on children with Down syndrome, ran a more full blood panel, and when I got the results from the lab, it showed elevated Reverse T3, along with a TSH level that was higher than ever. (It’s not sky-high, but it’s well above what is considered optimal for kids, and it’s above even the high limits of “normal”—even by Kaiser standards.)

According to the naturopath, the values in his bloodwork indicate that his thyroid gland produces plenty of TSH, but at a cellular level, his body isn’t processing it correctly—it’s turning it into Reverse T3, which is the inactive form of the hormone. Which is why he’s showing signs of hypothyroidism. So, her advice is to put him on dessicated thyroid extract, which is derived from pig thyroid hormone, instead of synthetic thyroid. The reason? Synthetic thyroid works only on T4, and he already has plenty of T4. Dessicated thyroid works on T3, which is where he’s having the problem.

We’re fine with this. Dessicated thyroid treatments were developed more than 100 years ago and have been used since. There is virtually no risk to either the dessicated or the synthetic, and the doctor’s reasoning for dessicated makes perfect sense to us. Plus, several of Sam’s little buddies are on it and have had positive results, which is always good to hear. So, his prescription for dessicated thyroid should arrive on Monday, and we’ll get started.

The thyroid issue that Sam’s having, by the way, can be caused by three things, the naturopath told me: (1) Low iron, (2) low cortisol (I think it was low—though don’t quote me on that), and (3) high oxidative stress. Sam has had low iron pretty much since birth, and high oxidative stress exists in almost everyone with DS, so those are the two likely culprits. However, the naturopath is sending me a lab kit to check his cortisol just to make sure we’re okay there. (It’s a simple saliva sample that I send back to the lab. Easy peasy. Much easier than the darn blood draws, which were completely traumatic!)

In case you’re wondering what high oxidative stress is, as I was, it means high levels of oxygen in the body, which is hard on the body and organs. Evidently it’s extremely common in DS—and actually, it occurs to some extent in most of the population. That’s why we’re advised to eat foods rich in antioxidants—they combat that. The naturopath told me that high oxidative stress is hard to treat, but it kind of interplays with the thyroid stuff, so addressing one should help the other. In theory…

So I’m not thrilled to have Sam starting medicine…but Chris and I talked a lot about it, and we think it’s for the best. Hypothyroidism, even subclinical, can mess with cognitive development, and Sam is at the age where cognitive development is most crucial (age 0-3). So to not treat him seems remiss. Let’s face it—by the very nature of his chromosome count, he’s already behind the 8 ball when it comes to cognitive development. We don’t want to further negatively affect that. He’s a smart little cookie, but he does learn and process more slowly than a typical child; we cannot deny that. It just is, but we don’t want to make it any worse.

So as long as we’re talking about development, I’ll share another crappy part of the week. I got Sam’s six-month evaluation from his Early Intervention program, and it wasn’t great. His last one was pretty positive, but this one showed almost no progress in six months. Which is very depressing, because we know he’s made progress—just not in the areas they’d like to see. He’s 26 months old, and his expressive language was evaluated as the level of a nine-month-old. His gross-motor skills were at the level of a 10-month-old. And even his receptive language (that is, what he understands) was evaluated at only 14 months old, which seemed dreadfully low to me—I feel like he understands much more than that!

So at the meeting, I brought up that I wasn’t overly thrilled with the test—that I understand its purpose, but that I don’t think it was terribly indicative of Sam’s abilities. And his wonderful OT, bless her, stuck up for him every step of the way—repeatedly saying that he was evaluated in a new environment (his Early Intervention program) where he’s not sure of everything yet and is much quieter than he is at home. She basically came right out and said, “I have to write down what he did for me here, but I know for certain how much more he does at home. I’ve been there; I’ve seen him. And I wish I was allowed to put that on this test.”

Okay, good. That’s what I wanted to hear…but then the speech therapist seemed to be consistently negative, which really bothered me. I don’t know her well—she’s not his speech therapist who works with him here, who we love. She’s a therapist at the EI program, and she’s worked with him in group speech therapy, where he’s evidently very quiet.

That’s fine, and she was polite, but every time I tried to bring up what he could do, she just kept focusing on what he wasn’t doing. And I felt as if there was an underlying, “You’re not doing quite enough at home, Mom.” I may be misinterpreting that, but that was the vibe I got…and I didn’t particularly appreciate it.

Want an example? The report on his expressive language specifically cited that he could not identify a picture of a cookie when showed three pictures of food items. I laughed and said, “I’m not surprised, given that he doesn’t even know what a cookie is! He only eats a few foods, and none of them are sweet. He doesn’t like sweet foods, so he’s never had a cookie. If you showed him a picture of a goldfish cracker or a pretzel, he’d nail it!” This led the speech therapist to keep hammering me about how I need to make sure he’s aware of what objects are, even if he doesn’t like them. Evidently I should’ve been showing him cookies all along, so he’d know what they were. Well…okay. I see the point to that, but think of me as his mother here. Think of yourself as a parent. Would you intuitively know that you ought to be showing your kids pictures of things they don’t like? I know I didn’t know that! I’m not a speech therapist! I take Sam for a walk and point out birds and trees and trucks. In the house we talk about the dogs and his clothes and his toys. Out in the yard we talk about balls and water and plants. You know what I mean? I talk to him about what’s natural to talk to your child about—the things that interest him and the things we see. We don’t see cookies because he doesn’t like them (and I can’t eat them!). It never dawned on me that I was doing him a disservice by not talking to him about cookies, for god’s sake. And yet she kept hammering on stuff like this—what I’m not doing that evidently I should be. Made me feel like a bit of a failure, you know? Sheesh.

And then his OT (again, bless her!) pointed out that he’s combining multiple signs now—two to three signs at a time sometimes, to get his point across. The speech therapist’s response was, “Well, great, but what I really need to see him doing is starting to use language more. And he can’t do that with two- or three-word combinations. We need to go back to single words and start working on oral language.” It felt like a “Well, you’re steering him in the wrong direction” moment. And I felt like saying, “Hey, I’m doing the best I can here. He’s trying to communicate, and I’m working with him to do it. Stop badgering me, lady!

Anyway, as it turns out her contract is up and there will be a new speech therapist starting next week. I’m not sad about that. 😉

All right, two more crap parts to the week, and then you get to the good stuff! Just when we though we were out of cold and flu season, Chris and I got sick again! By some small miracle, neither of the boys seems to have gotten it. But Chris and I have felt semi-lousy for days. It’s not the worst cold ever, but it’s not overly pleasant. And I really thought we were done with being sick in this household. Blah.

Okay, last crappy bit. I was already feeling a bit beaten down this week—Sam’s evaluation and thyroid, and a couple other minor miscellaneous things that just didn’t go terribly well. And then I had a massive work blowup that still has me reeling. While protecting details so as not to incriminate anyone, I’ll just give you the gist of it, because honestly, I still just can’t make sense of it. Someone I have worked with for more than 15 years decided to send me not one, but two scathing emails. Just really rude, offensive emails about my work ethic and the quality of my work. And the tone was really the worst part. She misinterpreted an email reply from me and then she had some complaints about my work, and if she had simply asked me about it instead of lashing out at me, none of this ever would’ve happened. She never brought up concerns about the work issues—some of which were valid and some of which weren’t, and the ones that were valid, I certainly could’ve addressed for her! And she just immediately assumed the worst about my email and sent me back and really snotty reply.

I asked Chris and another person to look over my original email, which she thought was rude. I honestly didn’t feel it was rude in the least, but apparently she did, and so I wondered whether I had been unintentionally rude. (It’s so easy to misinterpret tone in email, etc.) Both Chris and the other person said no—they didn’t see at all how she could’ve taken offense to my email. It was pleasant and reasonable and professional. And Chris is almost too careful with email correspondence, in my opinion—he will obsess over making sure he hasn’t said anything offensive. So if he didn’t see anything rude or offensive in it, I truly believe there was nothing objectionable in it.

He did, however, think that this colleague’s email was completely rude and out of line. In fact, he said he if he ever talked like that to one of his coworkers, he would’ve been written up or fired. Yeah, I thought the same thing…and so did the other person who read it.

So I wrote back a reply basically saying, “I didn’t at all mean this how you interpreted it, and I’m sorry if you thought I was saying that. However, I’m hurt and angry that you would lash out at me instead of simply asking me whether I had meant it in the way you interpreted it. We’ve worked together for 15 years, and we’ve never had a problem, so I can’t understand why you would suddenly think I would send you a rude email.”

I thought that was a fair answer, but she evidently stayed mad—and this weekend sent me another nasty, scathing email about another issue. And again—no benefit of the doubt for me. No asking me about issues she had—simply lashing out with anger. What?? I’m seriously so confused. And mad. I’m sorry, but you don’t talk to colleagues like that. Or friends. And we were friends. Not anymore, though. After responding to her email (and getting yet another exchange from her), I quietly de-friended her on Facebook—which angered her further, and she sent me another angry email about it. I replied that I don’t want to be friends with someone who would treat me that way, and I can’t see how she would want to be friends with me, either, given how rudely she’s treating me.

So why do I share with you this stupid work situation? Because I’m just honestly floored that anyone would treat someone else that way. We’ve had a not just cordial, but good relationship for 15 years, and now she tells me she’s just “calling it like she sees it.” Okay, but you can do that with tact. I, too, call things like I see them, but I would like to think I do so with tact. I don’t just attack people out of the blue without giving them a chance to explain their side or work together on a solution.

Truly, I think some people like these kinds of volatile relationships—I’ve heard of couples who thrive on the “passion” of fighting. Well, whatever works for them is great, but that kind of relationship does not work for me—with friends or spouse. I don’t do relationships where you blow up at other people and then just expect everything to blow over. No. If you have a problem with me, let’s talk reasonably. But if you go for the jugular and then expect me to just sit back and take it…yeah, that’s not going to happen. I’m not going to engage in the drama of a prolonged fighting back, but I’m also not going to keep a negative person like that as part of my life. It’s just not okay with me.

I’ve had the same best friends for 35 and 28 years, respectively. I’ve been with the same man for 9 years. You know what I love about these three people? That we don’t always agree, but that when we don’t, we don’t rip each other apart! We don’t say nasty, hurtful things and then just figure, “Oh, well, these things happen.” No…these friends of mine and this husband of mine are the types of people who are always thoughtful and kind, even when we don’t agree. They don’t go out of their way to hurt other people just because they’re angry. And those are the kind of people I want in my corner. Those are the kind of people to whom I will always be unfailingly loyal and devoted. Those are the keepers in this world. Not the ones who will turn on you without a moment’s notice and suddenly fly into a rage.

By the way, lest you think I’m completely heartless, it has occurred to me that this person may have something going on in her personal or professional life that has absolutely nothing to do with me, and that may have her so on edge that she just took it all out on me. I know that. I get that. But I’m still not leaving myself open to being torn apart again. Because you know what? I was so hurt and angry that I cried, and my hands shook like leaves. I don’t need that. I work hard to maintain a calm, positive environment around here—for myself and for my family. No negativity, please! Constructive criticism is accepted; angry negativity is not!

So on that note, bring on the positive parts of the week. Because oh, did they ever exist! In amongst the crap, there were nuggets of gold.

The first one arrived on Monday night, when I went to Theo’s school for a Parent Meeting. Chris and I never win anything. We recently went to a raffle fundraiser for Theo’s school, and nearly everyone won something, but we won nothing. About the only thing we seemed to win in life is that whole extra-chromosome lottery—you know, the 1-in-400 odds. (I joke about that, but seriously—best thing that ever happened to us. Sounds crazy, but Sam changed everything, for all of us. There are challenges, as you have all heard me talk about, but having him truly was like winning the lottery.)

But seriously, we are just not people who win things. So it was with a bit of grumbling that a couple of months ago I shelled out $50 for 10 raffle tickets for Theo’s school. It was a fundraiser, and there was just one prize: a $1,000, one-week vacation. You know me—a sucker for travel! So I bought the darn tickets. Monday night, they did the drawing—and I was sure we had no chance, because a lot of the other people there had bought tickets, and some had bought a lot more than I had. Imagine my shock when they called “Theo Small!” I nearly wet my pants!!! So exciting!!!

So anyway, they sent me home with a lovely 500-page book of timeshare properties to choose from. I called the timeshare place to find out which ones were included in my “$1,000” certificate, and they said, “Oh, don’t worry about price. You can pick any one in the book, and it’s good for a week. As long as we have space, you can go anywhere.” Anywhere. In the entire world, in fact!

Now, the truth is, we have to pay to get to “anywhere,” so it’s not like we can really just pick up and choose a week in Paris. And the certificate is a “Flex” certificate, so we have to book our travel within 59 days of the week we want, which means we can’t plan way ahead and score cheap plane tickets. But still, no complaints! We’ve decided we’ll try for either a place in California or Oregon, or we’ll do this one in Virginia that looks completely awesome and happens to be near my aunt and uncle, who we want to visit! Truly, given the limitations on timing and the cost of plane tickets, a drivable one on the West Coast is more likely. But we’re still considering the Virginia one if they have space open up and if we can find decent plane fare.

And whatever we do, it’s a vacation!! So we’re excited!!

Okay, second exciting bit. Guess who took five unassisted steps on his own on Tuesday?! Oh yes, that would be Mr. Sam! He did it twice and won’t do it again, but he did it! And he has never before taken even one on his own, so this was pretty amazing! The first time he did it, he was trying to flee his evil physical therapist and get to me (ha!), and he was squalling and I was crying tears of joy! The second time was apparently from the PT to the piano bench, where she had strategically placed her iPhone to try to lure him toward it. At that point I had been banished upstairs, because Sam has apparently decided that if Mama is in the room, he doesn’t need to do any physical therapy. So now I go hide up stairs and peek over the banister at him when he doesn’t know I’m looking. 🙂

Speaking of walking…or in my case, jogging, I earned my 3K runner badge this week! This isn’t a real badge—it’s just a little “reward” from the Couch-to-5K app I’m using to work on my jogging. But what it means is that I can now jog 3 kilometers (1.8 miles) without stopping! Wow! I never thought I’d be able to do that!! I’m very, very slow…but I’m doing it!

Okay, the last happy bits of the week concern the weekend. When I wasn’t getting lambasted by an angry colleague, I was enjoying the weekend with my little family. On Saturday morning we went to Dynamo Donuts in San Francisco to meet up with two of my former students, and we had a great time (plus really good donuts!). After meeting them at the Marina, we headed over the Golden Gate Bridge to our favorite children’s museum and spent a couple of hours there. The weather was nice and the boys both had fun, so it was a good time.

On Sunday, the weather was gorgeous and we felt like a little hike on Mt. Diablo, which is nice and green right now, so we headed to Rock City, which a mom from Theo’s school had told me about. It’s a part of the park that has a bunch of sandstone rocks that have been carved out by the wind and water so they have all sorts of little crevices and footholds and nooks and crannies to explore. Super cool! Theo had a blast exploring, as there were quite a few other kids and people around exploring too. We met a lot of nice hikers and even came across one group who had a daughter (maybe seven or eight years old) that I’m certain has DS! None of us said anything (blurting out “Hey, got an extra chromosome there?” is kind of weird!), but I’m just certain she did—it was so great to see her having fun hiking with her family and friends. Love to get those glimpses into our future with Sam, when he’s more mobile and able to communicate with others!

After a couple of hours at Rock City, we had some pizza and then hit a park/playground to let Sam crawl around. (He had spent the time at Rock City riding in the hiking backpack and taking a little snooze.) Theo and Chris played some baseball, both kids played on the playground, and I got some fun pictures of Sam engaging in his favorite activity—tackling his brother. Sam is a total rough-houser, and Theo gamely puts up with being tackled by him repeatedly. Sam thinks it’s the funniest thing in the world to crawl up to Theo, get up on his knees as tall as he can, and then let out an unearthly howl while he giggles and throws himself on top of his brother. Over and over and over he’ll do this, all the while Theo giggles like mad. It’s very cute…even if I’m always slightly worrying about the size difference in the two! (Theo is actually very good about being gentle with him, but you know–he’s twice as big, so I worry a bit!)

Anyway, I leave you with lots of picture and with two videos. Sam isn’t really taking much of a step in the video of him coming toward me, but still—you can get the idea. Imagine him taking five of those in a row—it was awesome! And in the other video, I was utterly impressed with his problem-solving skills. We never showed him what to do when he hits a wall with his walking toys, yet he figured out a solution. I would love to show this to the geneticist who told me, when Sam was a baby, “People with Down syndrome aren’t capable of problem-solving.” Really, Doctor? You watch the video of him figuring out how to walk back and forth across a room when he hits a wall, and then tell me that again. 🙂

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