Updates on Laurel: March 2003

Well, after not being at all sure we would, we made it through the snowstorm and got to California OK. But now Laurel's sick, and we had to cancel our plans to meet Lorena (escritora) for brunch and go to Disneyland today. We were suspicious when she started throwing up and having diarrhea on Thursday, but we were hoping maybe that meant she just had a little, short-lived tummy bug. But she's got a full-blown cold this morning that drugs don't even seem to be touching. She just seems too miserable to go anywhere. So we are probably just going to sit here and look at the beautiful weather. :-( We can't even visit with my sister today because she went to an all-day class. And Bob has got diarrhea now too. I am SO disappointed, I wanted to meet Lorena and I figured Laurel would really like Disneyland, not that she is into the characters but she seems to like rides (she's been on a ferris wheel and a train so far) and she loves music and crowds and excitement. And today was our only chance, because tomorrow we're going down to my sister's timeshare in the San Diego area and staying there the rest of the week. Please pray that she feels better soon (Bob too) so we can at least take her out and do some fun stuff with her this week!

Update on us - we DID end up going to Disneyland yesterday. Laurel took another nap and got some more medicine and by about 1:00, she was mellow enough that we decided to go to the Downtown Disney shops outside the park and see how she did and whether it seemed like she might be up to going in. We walked around a bit and found and ate lunch and she seemed like she wasn't doing too badly, so we gulped and paid the $94 for the two of us and took the monorail over. The first thing we did was make our way back to Town Hall to ask about what we might be able to take Laurel on. She went over a few things with us and gave us a Special Assistance Pass so we could get in the handicapped entrances. I felt a bit cheesy doing that, but I was glad because you can't take strollers in the lines and we just couldn't have carried her through very many, she's getting too heavy. Well, then it was time to feed her so we did that and watched the parade. That didn't go so well, she had some more nasty diarrhea and then her bottom was sore, but we took her to a show in Adventureland that had lots of fiddles (she likes country music :-) and that seemed to adjust her attitude. But then we took her on Pirates of the Caribbean and she fell asleep! Slept right through the Haunted Mansion, too. But then she woke up, and needed some more medicine, and after we got her settled was the best part of the entire evening. We took her on Peter Pan's Flight and her eyes just went sproing. I think she recognized the music from her sing-along video. She was wide-eyed on that and the next ride, It's a Small World - she just couldn't look around enough. She was so wiped after all that looking though that she zonked for a couple of minutes! But we were so happy that she had enjoyed herself that we were practically crying. We took her on several more things in Fantasyland (that she liked but not quite as much), had dinner and another nap (well, she did, although we could have used one too!) and did a couple more things and left way too late. We're both just beat now! Although I think Laurel is already doing a bit better, and Bob seems to be better as well. We're about to leave for my sister's timeshare, where hopefully we'll all have a nice long nap. :-) I don't think there's any internet access there, so see you all again next weekend, and thanks for the good thoughts, they seem to be working!

Finally, the rest of our California adventure!

Wednesday we left Laurel with my sister for a few hours and drove up the Pacific Coast Highway to see The Flower Fields (they have all these acres of anemones you can walk through that they grow for bulbs) and the mission at San Juan Capistrano. I'd never seen a mission before, so that was pretty cool. The anemones were pretty, but I think they'd be a little more impressive later in the season when more of them would be blooming.

Thursday we went whale watching! We'd hoped Laurel would enjoy the boat ride, but I think it was too cold and windy for her - she was fine in the galley but fussy every time we ventured out (except when the boat was stopped). But we saw a lot of whales! There was a pod of about 15 or so and we got lots of views of sides and tails. Thursday night we met a couple of my cousins for dinner - I'm especially glad we caught up with the one cousin before he moves to Montana, that's a place we get to even less often than California (seeing as how I haven't been there yet).

Early Friday morning, we had to go. Laurel is *such* a good kid on planes and everything would have been great except that the plane we took from Philly to BWI was switched and they kept having snafus with the passengers who had been on the plane from Phoenix and we left really late. So a little after 11 PM we called the hotel (we had done one of those Park'N'Fly things) and they said, go outside and wait, our shuttle will be there shortly. So we stood there and stood there, and I think close to half an hour passed and Laurel was cold and whining and we were trying to snuggle her as tight as we could and finally Bob went in and called the hotel and they told us to take a cab on them. When we got to the hotel I asked what had happened and the girl at the desk said, "Oh, the shuttle stops running at 11." Thank you so very FREAKING much for telling us that before we stood out in the cold with a freezing 2-year-old! But since we'd decided (in advance) to stay at the hotel rather than get home around 3 AM, at least that was the end of our adventure for the night. The next day we walked around an outlet mall some (Arundel Mills) and headed for home (we'd thought about going to the National Aquarium, but we were tired and not really in the mood to hassle them about their no-stroller policy, either).

Speaking of strollers, we are really pleased with the Peg Perego we bought on our way to NC! We never would have survived Disney without it. She's still not totally crazy about being there, but it just doesn't induce the kind of hysteria that the other strollers did. For instance, she whined after we'd been at the mall a little while, but when we informed her that she was GOING to stay in her stroller, she shut up about it. With the other strollers, she would have started screaming pretty much the instant we put her in.

Laurel did a lot better sick-wise than I thought she was going to at the beginning of the trip, but she's had persistent diarrhea (3-6 poopy diapers a day) for about a week and half and her g-tube button site is still oozing and bleeding, so I took her to the doctor's yesterday. The doc said there's been a lot of persistent diarrhea after viral infections going around, but she was worried when I told her it was really dark and she wanted to check it for blood. So Bob got the delightful task of escorting one of Laurel's toxic diapers to the doc's office this morning. ;-) The doc also cauterized the button site with some silver nitrate, but this morning it looked to me like she might not have gotten it well enough. I'll see how it looks tonight and call the doc again (or catch up with her when she calls about the diaper - if it looks OK, we're supposed to try giving Laurel something to firm her stools) if it's still oozing.

So that's the update. Now we're just trying to get back into our routines and wishing we were still in CA!

Uh-oh, we may have created a monster! ;-)

Speaking of Laurel's vision, on Friday Bob and I invited ourselves to a talk for therapists by a behavioral optometrist (I didn't even know such things existed, and this one's right in town!). She believes in and teaches vision therapy, which is a huge step up from the ophthalmologists we've seen. Bob talked to her afterwards about Laurel (I had to leave for work before it was over), and she told Bob that the pleoptics we've been doing (the thing with shining a flashlight with a penny glued to it into Laurel's eyes) is one of the best things we could do for her! She said it works because the light temporarily washes out the peripheral vision (what Laurel mostly tends to use), leaving her momentarily with only her central vision (what we're trying to improve). It was so nice to both have an explanation for it (we've never gotten a good one from NACD) and confirmation that it's a good thing to do - the other professionals we've mentioned it to looked at us like we were nuts, and honestly, we were a bit worried that shining a light in her eyes maybe wasn't the best idea. Bob also asked her about something I saw on the NACD listserve, that refraction results (in other words, the eyeglass prescription) can be inaccurate for kids with poor central vision. She said she'd never heard of that. (I wrote one of the staff members at NACD to ask more about it, too, but haven't heard back yet.) I think we are going to take Laurel to her, though, just to double-check her prescription (it occurs to us that Laurel won't be able to tell us if it's wrong, and if it's wrong it could do more harm than good) and to see if she has any more ideas for Laurel upon seeing her.

OK, I think we're going to try to go to a maple-sugar festival today (yes, they have one in Virginia!) so I should get going - it takes a while to get our little licorice addict ready to travel! :-)

Haven't had much time to post! Laurel went to the surgeon Monday for her follow-up to her hospital visit (finally!). The site is *still* oozing a little bit of pus and the surgeon thinks that there is an infected stitch (when they placed the g-tube, apparently they used some permanent silk stitches, although they're not needed now). So Laurel is going to have to go to surgery next Tuesday to have the stitch removed (they'll replace the button while they're at it, which it's more than time for). Anesthesia, the whole 9 yards. It's outpatient and probably not a big deal but it's hard not to be nervous. Somehow filling out the 2-page anesthesia questionnaire and getting the booklet "About Your Surgery" makes it feel like a big deal. On the plus side, at least for once she'll sleep through the part where they yank the thing out. We had hoped we might talk the surgeon into switching her to a type of button that doesn't have such a high valve failure rate but he hadn't heard of the one I'd heard of (I hate when I know more than the doctors do, it doesn't really inspire confidence) and the only other one he works with has a whole different set of problems we're not sure we want to get into.

BTW, Laurel is STILL having diarrhea (guess it's been about a month now) although we are averaging more like 2-3 dirty diapers a day rather than the 5-6 we were having. Her ped took samples for blood and bacteria but didn't see anything interesting and doesn't have anything to offer. I'm not thrilled since we've had a few blowouts and they really reek. Although at least, as long as she stays at the 2-3 diaper level, we seem to be able to keep the diaper rash under control. But on the plus side, she seems to be doing better gas-pain-wise than she's done in ages, so we're happy about that! Bob wonders if maybe it's just that the spasticity has reduced in her intestines (it's recently reduced some more in her arms as well). Once we have a valve that works, we might try adding some more solids through her tube and see if that helps (or even see if we can get enough down her orally - come to think of it, yesterday was her best day in a long time and that was after she'd eaten an ounce or so of rice cereal with applesauce for the ST the night before. Don't know if that would be enough to make a difference or not).

But anyway, we could probably use a few prayers (calming vibes for Mom and Dad too ;-) for next Tuesday!

Laurel ate probably close to 100 calories by mouth yesterday! Not that it was terribly nutritious, mind you - 2-3 oz of applesauce and half each of a couple of small cookies. But still, that's about a ninth of the calories she's supposed to get for the day! (She gets less than a more active kid would.) Or looked at another way, a little more than half of one of her feedings. The most she's eaten in a day, anyway (and most of it was at one sitting).

I think we are going to start a big push to get her eating more. Her speech therapist wants to set us up with a nutritionist who's based out of Richmond (but the ST has several families who are interested so she thinks she'll come up here for a day) who specializes in oral feeding problems and getting kids off g-tubes. She's supposed to set us up with a meal plan to get Laurel off the tube. I'm excited but nervous - I can see that this is going to be a LOT of work, and even though I hate the tube, we've never done anything else and change is scary! But I think the idea is to have her eating with the other kids when she goes to the special-needs preschool in the fall. :-) The ST seemed to me like she really wanted to say "off the tube by fall" but she stopped herself and said "a whole lot better by fall" instead. Although Laurel still has some aversion and control problems, the ST feels that the biggest problem we have to work on at this point is strength/stamina.

Meanwhile, we are getting ready to take Laurel up to stay with Jen (cnedaria) this weekend while we celebrate our 13th anniversary. (Thank you so much Jen!!!) So I should get going. :-)