Friday, August 31, 2007


What a week. Q played in the pool two days--he'd have been happy to have spent two whole days in pools, but alas, one must eat, sleep, go to therapy. He's entertaining the grandparents now with a set of flashing, singing bongos, smacking them with both fists then squealing his approval at the noise, lights, and his ability to Make Something Happen.

On Tuesday, he was weighed and measured, pricked for his hematocrit. He's about the 25th percentile for weight, 50th for height, and quite nicely full of iron.

On Thursday, we went to the neurologist. This was the first visit back since beginning Clonazepam. The nice neuro man made Donald Duck noises at Q again--something which seems to always grab his attention and hold it. Q was smiley, playful, took steps when supported. The doc noted that this is especially important as he grows because the act of weight bearing increases the depth of his hip sockets, therefore decreasing potential hip dysplasia and hopefully ruling out surgeries. Well of course it does, but who would think about this with a typically developing kid? They get mobile, up on their feet, and nobody ever has to say, "Now's a good time to be thinking about weight bearing to encourage the proper development of bone density and depth of hip sockets." You ever had that conversation? No? Yeah, this is kiddo number five and I never had either. Odd, the things that pop up.

The neuro guy is also impressed that Q's seizures have been so "easily" addressed. So am I, really. The first med worked. Even with some increases, the dosing is still in the low end of the range, the side effects have been apparently zero, and he hasn't developed anything else more serious or intractable. All of these things bode very well for Q's prognosis. He could absolutely still go on to develop more or different seizures, but thus far, (deep breath) we're all pretty happy. Fingers crossed, eyes heavenward. I asked if he thought that given the ease of treatment, perhaps Q hadn't really been having seizures at all. No, he thinks Q really was. We're just fortunate to have a good fit with meds.

We talked about Q's Clonazepam dosing and decided to leave it alone for the time being. Sometimes he naps, sometimes he doesn't--still having a couple of startles as he's dropping off for naps, but he usually sleeps at least 7 hours at night, sometimes even 9. The dosing with this med doesn't make him sleepy, as one would expect for a side effect, rather it makes it so that he can sleep. He's still with one quarter tab in the morning, one half in the evening. As long as he isn't striving for a bedtime of one, two or three a.m. then getting up at six or four for the day, we'll leave it where it is. The doc has no problem raising the dose. It's a very small one. But as Q is likely to need some sort of help with this for, well, ever, he's thinking that it's best to wait until there's perhaps a clear need. The startles aren't harmful, just really annoying (scary for Q), and meds often become less useful over time for no good reason--perhaps simple individual tolerance occurs. So we'll reserve the higher doses for when the boy is again awake for most of two days. God help me.

Part of our discussion included the concern that the Clonazepam may be dropping Q's oral tone enough to lose him a smidge of mobility. I've been noticing that he has less tolerance for textures and thinner foods--as in, he seems to not be moving them into a good swallowing position as well as he once did. What to do? The g-tube thing came up again as he was reading other docs' notes from their visits with Q. He says that as long as Q continues to grow, has some fat on him (calipers could be used), and it's not taking say, 10 hours to feed him every day, there's really no need to be concerned with a g-tube. (Whoopee!!!) Since the width between percentages on the growth chart is typical also for his siblings, and we know that due to his brain anomalies Q is likely to not grow as much as the other kids, and he has round cheeks, fat fingers and feet (nothing on the tum, though), we're good. For now, anyway.

Also, as we began to wrap things up, the doc said, "Well, it's pretty clear that Q has a good quality of life. He's happy, responsive, engaged, he certainly has challenges in the area of motor planning and I'd recommend that he continue neuro developmental therapies for a long time, but he's making progress, he doesn't have chronic pain, and he has a beautiful smile. He's a happy kid."

For some reason, I seem to take this pretty personally--it makes me beam. Not that I can take any credit for his personality or anything. Hearing these kinds of things just makes me glad. With all the crap in the world, Q is happy. And other people, people who are perhaps not so tired or subjective in their opinions, they think so too.

As we were loading into the chair/stroller deally-bob, the nice neuro guy said solemnly (as only neuro guys can), "Well, Q, one thing I like for sure is... your dimples." I love it.

So. Today, then: Q got his boots. His foot orthotics are blue/green with some black--camouflage. Ha! This cracks me up no end. For the perfect finishing touch, the middle Velcro strap has a ribbon sewn on--white hibiscus flowers on a blue background. The boy will be so popular on the beach. Hanging ten, ridin' the waves, with his Hawaiian shirt on his boots. I have no idea why I find this so funny. Kinda like the little ducky bib he has--it reads: I'm special. This makes me laugh. Of course he's special! And yes, he's "special" too. Then that part makes me all weepy and tired. Welcome to my short little turn on the crazy roller coaster called Motherhood. This response is predictable, every time I see the bib, there I go again: chuckle, laugh, chortle, cry, weep, sob. Makes me wonder why I haven't tossed it yet.

But I digress. After the boy got those feet in those boots and they got their last trim so they fit just perfectly (boots, not feet), he got into a stander! And we got to bring it home! It's from the loaner program and it has monkeys on it and he cried when I took him out. The same way he cried when I took him out of the pool and life jacket on Wednesday. The same way he cried when Grandma set the drums down a few minutes ago and he couldn't reach them anymore. It's safe to say that he's excited.

I was looking at paint chips this afternoon--gotta finish that exterior trim and the garage doors. I love Ralph Lauren colors. Somehow they just seem richer, more saturated. I saw the color Mt. Rainier. About four years ago, I painted a certain someone's study a light blue. It was something Lake. I can't remember the rest of the name, but he thought it looked like a baby's room (insert sad face here). I'd been trying to surprise him with something that I hoped would look like water because the room he was taking as his study was out in the garage, had no heat or A/C, and was seriously lacking in charm. I picked the blue out of the surface of his desk--mottled blue and grays, and matched the gray Mt. Rainier to the desk as well, planning to paint things on his wall. You know, sayings about fatherhood, what a great husband he was, certain, um, verses from the Song of Solomon. I didn't get it done. We moved into the house, had all of creation over for the weekend of graduation, had surgery, Tahiti, and he began his internship. Boom, boom, boom. As he was working those hideous hours, surprising him by painting sweet sayings on his wall fell down the list of priorities. We were instead spending every waking moment together, doing family things, fighting the sucking drain of his wretched schedule. Anyway, seeing the color brought back memories. I wonder if color is as powerful as scents in laying down and recalling memory? Heard this awhile back while flipping channels and nursing the now sleeping Q: Embrace the truth, whatever it is. Love the memories, even if they're painful. --Unknown

Have you ever been typing away and all of a sudden you realize your eyes are closed and your fingers have just kept going? And that somehow, they all slipped sideways one key and nothing you've typed makes any sense? (Delete key........)

I'm going to bed.

Squeeze your beloveds extra tight (from me). 'night.


Anonymous said...

You should write a book. You have a way with words that pulls you in.

sleepy jeanne said...

Aaah, love hearin' lots of good news. My favorite part: "Q is happy." That's what it all comes down to, isn't it?

And you gotta love medical professionals who do the Donald Duck voice. My little one got an immunization last week and tears were streaming down her face :-(
Doc starts in with Donald Duck voice, and she broke into the biggest grin :-)

take care.

Zoo Keeper said...

Isn't it cool how exciting it is when one thing just goes RIGHT? My son's glaucoma medication was like that. I got to hear all about all the painful medications, only two don't burn and they are the mildest ones, he will likely need more as he gets older, etc...

And those were the two that worked, the non-burning ones. Thank God. Something went right. : )

I'm glad things are going well with Q. I'll update my guys.