Updates on Laurel: January 2003

Well, I'll be darned, Laurel *doesn't* have an ear infection.  She reached a whole new level of cranky Friday night, until in the sleep-deprivation haze it came to Bob about 6:30 AM (I handed her over at about 3:45, and no, sigh, it didn't occur to me either) that Motrin might be a good idea and she conked out 15 minutes later. So we thought "ah-ha, ear infection" (and "oh joy, we won't be able to get her to a doctor until Monday"). But we took her to the doc this morning and her ears were clean as a whistle. Meanwhile she's been a bear every time the Motrin wears off, so I don't know what's going on! The doctor couldn't find a thing. We're happy about the lack of ear infection (this makes the third cold in a row now that *hasn't* gone into an ear infection, so we're hoping maybe she's outgrowing them) but were kind of hoping for an obvious cause, you know? I haven't even seen any movement with her teeth lately...

We had just figured, an ear infection, what a perfect end to a perfect trip. Since I last wrote, my mom's sewer line got blocked and flooded the laundry room, I hurt my "good" shoulder somehow (fortunately that seems to have gotten better with lots of ibuprofen and heat packs), the special rolls Mom always makes for "Christmas" dinner didn't rise (I know that doesn't sound like much, but it was clearly a huge deal to her), our plans to meet that other family with the brain-injured child had to be canceled, and I got stuck on an icy cemetery road, where I spent about 20 minutes trying not to send the car down the hillside into a row of headstones and cursing myself for forgetting to bring the cell phone. And I think I've got a sinus infection. (And we thought Mom had a flat tire, but that turned out to be a false alarm - Mom should probably check her tires a wee bit more often...)

Anyway, we're glad to be home, although I feel bad that it didn't end up that we did that much with (aside from talking to her) or for Mom - it just felt like we spent the whole week panting with exhaustion. I'll sure be glad when Laurel feels better (Bob too, he's still sick as well). Laurel was up until 3 AM yet again last night - a good night lately has been 2 AM, and she's often been waking up during the night too.

I'm hoping it was still worthwhile to see the doc today. We had a conversation about (OK, I pretty much begged for) anything that we might do to help that sore on Laurel's tongue heal. It's been there for about three months now, and she bites it several times every day. Sometimes it makes her scream hysterically, and sometimes she won't make a sound but we'll look down at her and realize she's dripped blood on her shirt. I'm spending a couple of hours a week just getting the blood stains out. Anyway, Bob's sister told us about this stuff called Lidex that her oral surgeon gave her for canker sores that clears them up in three days. So we mentioned that to the doc and she was leery of using it (it's not really *supposed* to be used internally, I think) but talked to Laurel's regular ped (who's on maternity leave) who remembered seeing a presentation about using Flonase! Yep, the nasal spray for allergies. I guess the steroid in it helps (Lidex is a steroid, too). So Bob's picking up a sample on his way home tonight and we're supposed to try putting that on it once a day for a week. I'll let you know how it goes.

Well, that got long, but anyway, we're back and trying to recover from our vacation!

I called the pediatrician today, for two reasons: 1) to give her an update on how Laurel's tongue is doing and 2) because Laurel is STILL waking up screaming every morning, from all her naps, and most nights in the middle of the night. She stopped coughing but she still sounds like she's got lots of gunk in her nose and throat, and she's kind of choking and gagging when she wakes up. Although Bob and Laurel for the most part had the same symptoms at the same time with this cold, at this point he's doing a lot better than she is. So I asked the doc if she thought Laurel might have gotten a sinus infection, and she said that sounded likely and prescribed (right there, over the phone, but I guess there's not much they can do to dx a sinus infection in a little person anyway?) a couple of weeks of Amoxicillin. There was a while there where it looked like I had a sinus infection too, but I used my Nasonex really religiously for a while and it seems to have cleared up on its own.

As for the tongue sore, it's still pretty large in diameter but it looks a lot shallower and we haven't had a serious bleeding incident since we started the Flonase (although that being said, I did see that she bit it a tiny bit this afternoon - just a little drop of blood...). I think it's especially telling that, although she screamed bloody murder the first couple of days I put the Flonase on, she doesn't even flinch now. The doc said to continue another 3 days and then stop and see how she does. She thought it might be awhile before we didn't see it anymore - she figures there's a fair amount of scar tissue at this point.

Anyway, I'm hoping with the antibiotic on the way we'll soon see the end of both these problems and we'll ALL be much happier campers!

Laurel's first dentist appointment was this morning. She was a pretty good girl - she was mad (and did cry a bit when the dentist poked at her gums with the nasty pointy thing until they bled) but overall stayed really remarkably calm. The dentist said the yellow spots on her molars (the reason we took her) are tartar - her teeth were cleaned and we were told that we should brush her teeth twice a day with a little tartar-control toothpaste (well, that sounds like FUN...in case you're wondering what we do now, we've been running the "toothette" sponge over them when we do her oral stim exercises). She said that kids on seizure meds often have extra problems, especially with their gums which can wind up being swollen and fibrous, and then they swell around the teeth which then causes problems with the teeth. She said that if the kids are on the meds long enough the problem can become permanent and the gums may need to be cut away (even more fun!). She wants to see Laurel again in 6 months and if her incisors haven't come through by then, she wants to cut the gums over them (does the fun ever end?).

Also, Laurel's mouth sore hasn't improved any in the last several days (and I saw her give it a good bite yesterday), so it was still pretty impressive this morning. The dentist gave us a prescription for the same thing we'd asked the doctor about last week, Lidex. She says that if we use it 4-5x a day it should heal in a couple of days. I hope!! Although I wouldn't be surprised if what the doctor says is true and there's scar tissue there that may take longer to go away.

Despite my complaints about all the "fun" we're in for ;-), I was mostly pretty happy with the appointment. It was a relief to hear there wasn't anything more serious wrong with Laurel's teeth (and as we suspected, the dentist confirmed that the major reasons they're not all in yet are probably the seizure med and that Laurel doesn't do much biting or chewing). And I liked the dentist - she seemed pretty knowledgeable about special-needs kids (she advertises that she offers dentistry for children, teenagers and the handicapped, and our pediatrician had recommended her). So mostly I'd say it was good.

And on a more completely happy note, I made reservations this morning for us to spend a week in sunny CA in March! We are flying out Feb. 28 to spend a week with my sister. We are *hoping* that this will coincide with the week after our babysitter gives birth, because she's scheduled to be induced on Feb. 27 (baby, stay put till then! :-). But anyway, we had enough frequent flyer miles to pay for tickets for everyone but Laurel, so the three of us are going to CA for about $300! We will spend part of the time at my sister's home south of LA, and the other part coincides with their reservation for their timeshare near San Diego, where we've been invited to join them (they have a 2-BR unit b/c they got it before their kids left home). This will probably make our lives kind of crazy at the end of February, because we were already planning to go to the Nov. board get-together in North Carolina, which is the weekend before. But I am SO looking forward to this!

I'm feeling kind of discouraged today...Laurel still doesn't seem to be feeling well, the Lidex didn't do much for her tongue sore, and we got yelled at by her orthopedist this morning.

First off, after a week of antibiotics Laurel still seems snorky and is still waking up screaming. Although the waking up in the middle of the night has gotten a little better (at least lately she's been waiting till 6 AM or so). We've still got another week of antibiotics, and I don't know, if it's a sinus infection, how long to reasonably expect for it to clear up. I am sure that if she isn't any better by the time we're done with the antibiotics, we'd better drag her back in to the doc, but I don't know if I should call before that or not.

And we even tried an extra day on the Lidex, but I don't think it did much. I'm beginning to think she's going to have that tongue sore for the rest of her life.

Then, her orthopedist spent the appointment lecturing us about how if we didn't get serious about having Laurel wear her AFOs (ankle-foot orthotics, otherwise known as braces) all day every day, Laurel is going to have to have surgery or put on drugs that will make her sleepy (and probably won't work very well, from what I've heard). He also seemed mad that she hadn't been spending time in a stander, despite the fact that last time he hadn't seemed to think it was important. So she is *going* to have to start being in a stander, because again, he says if her ankles aren't being bent by weight bearing, she is going to need surgery or be put on the drugs. I'm not sure how I feel about the stander at this point - I tried to find out more about whether it would damage her hips when the subject came up before but nobody seemed to be able to give me any references. I guess I'm still not thrilled, because I'm not psyched about having her spend a bunch of time strapped into something. Besides the fact that it won't give her the opportunity to learn to move herself, she hates being strapped into things - we have NEVER been able to get her to tolerate her stroller for that reason - and I'm worried she'll cry and scream and get hysterical. But I guess we'll just have to put up with it. Meanwhile, I tried to put Laurel's AFOs on this afternoon like a good mom (after having taken them off because she was absolutely hysterical by the time we got home), but she just whined and cried and strained for half an hour until I finally gave up and took them off. At which point she immediately let rip a big one and relaxed. Then I felt both awful for having tortured her and like, oh my, am I going to have to take these things off every time she needs to pass gas? How do I tell the difference between whether she's whining because she doesn't like them or because she's miserable with gas or poop? (I know that sounds really weird, but Laurel always gets really stiff and straightens her whole body when she tries to pass gas or poop. Or push buttons. Or do much of anything. As the doctor said, I don't think she knows how to isolate muscles.) Ack.

The only bright spot today was that when they measured her they got the first good height they've gotten on her in months - 34.5" - and so we now know that she's still holding to her curves growth-wise (about 50th percentile in height and between 10th and 25th in weight - she's around 25 lbs). So that was good news. So many CP kids have problems that way; I'm so glad she hasn't been one of them. We had an appointment with the nutritionist (we didn't even know we had one until we got the appointment slip a few days ago, I hate the way this clinic does things) but as usual, despite my best efforts to glean information about switching Laurel's diet, we didn't get much - the most useful thing we got out of her was plotting those points on the curve. Which *was* reassuring, but I learned more from a friend who's a nutritionist via e-mail. I still think it might be nice to talk to a *useful* local nutritionist and mean to ask Laurel's speech therapist tonight if she has any recommendations.

All right, that's the news for now...

Just to make us feel better...

She says "I" sometimes when she's bored and we've wondered if that's "Hi" but this is the first time we were really pretty sure she was trying to imitate what we said. Not, of course, that we expect she'll do it again anytime soon... ;-)