Updates on Laurel: January 2002

Laurel has this rash...I think some other folks' babies had this, can you enlighten me? 

Laurel has had a cold for 2 1/2 weeks, and now I think she's come down with something else. She's started sneezing and snurfling all over again (she was mostly down to a cough - she's still doing that as well) and she's got this funny rash that's mostly on her face (there's one spot on her hand). My mom thinks it looks like mosquito bites; to me, it looks like little zits. Anyway, little red circles with a raised dot in the center. I remember seeing other people posting about a rash before, did your kid have something similar to this and if they did, what was it? How long did it last? Was there anything you could do for it other than wait it out? Should we try to track down a doctor-in-a-box here in Pittsburgh before we leave, or can it wait till she can see her regular doctor tomorrow?

Thanks for your help!

So, Laurel's doc thinks the most likely explanation for Laurel's rash is..."attenuated chicken pox." Although, she allows, it could just be associated with some other virus. But I think she thinks that it looks worse than that, although better than a typical case of chicken pox. Laurel was vaccinated for chicken pox in mid-November, but the doc says it takes 6 weeks to build full immunity and her guess is that Laurel was infected about mid-December, about 4 weeks after the shot. So she got chicken pox, but a fairly mild case. The doc's guess is that Laurel should be OK to go back to her babysitter next week. Laurel also has a mild ear infection. So, more amoxicillin...but it sounded like the doc was leaning that way anyway, just to make sure Laurel doesn't go into pneumonia (although her chest doesn't sound that bad so far - she has a nasty cough, though). And, we were given the bad news that, since we discovered last week that Dimetapp is another on the long list of Things That Make Laurel Throw Up, there's nothing else we can give her for the snurfling and sneezing and so forth (apparently anything else would lower her seizure threshold). Sigh...I just hate watching her suffer and not being able to do more about it...

Thanks to the folks who posted to my question yesterday! I didn't get a chance to respond in the mad rush to leave town, but I did read your posts and decided that it probably wasn't worth rushing to a doc in Pittsburgh (that was reinforced when we found out there weren't any doctors-in-a-box in Pittsburgh, so it was the emergency room or nothing). I'm glad we didn't mess with the emergency room, we'd have probably had to stay and drive home in the fun weather today (we haven't gotten that much snow here, but it's really slippery), plus our insurance wouldn't have covered it. So thanks! :-)

January 4, 2002

I think it's time to announce the official arrival of Laurel's first tooth! At least, I *think* it's finally broken through all the way across. The second one that started at almost the same time still has a long way to go, though, I can't believe how long this is taking!

And while I'm in happy-news mode, I want to say that we have been so pleased because Laurel has continued to make progress developmentally even while she's been sick these last several weeks! She's grabbed Bob's hand and brought it to her mouth, tried to grab the Kleenex out of my hand while I wiped her nose, stuck her fingers in her mouth several times (once even deciding to switch to a thumb), stopped crying and listened when I started to read her a story, and has had many comments to make on her condition, such as "a-luh" and "awa-awa" (by far the most interest she's shown in consonants yet). And, something that Bob is very proud of even though it scared both Laurel AND me to tears, last week she rolled off the bed! Well, I guess it's a milestone!

On the down side, she is still having mild clusters of seizures once every day or two. Her doc says it's probably because she's sick, though. She's still breaking out in new spots, so I'm afraid the doc may have been overly optimistic when she said Laurel could go back to the babysitter early next week. I'll be SO glad when she's finally well again!

Last night Laurel tried to shove her stuffed caterpillar in her mouth with her hands! Usually when she tries to get things in her mouth she does it by moving her head, but this time it occurred to her to use her hands! Although it didn't work - she's really got a long way to go on coordination. But at least she tried! She wouldn't let me help her, either. :-) She finally fell asleep in the midst of her efforts.

Thanks to all the people who responded to my post on Friday! I really didn't get a chance to post much Friday night or over the weekend. I'm always scared to hope too much, but I have to admit that I'm hoping that what all this progress means is that she'll be one of these kids that I've heard of that don't do too much for the first year, just kind of regroup, and then really take off in their second year! That's what I'm praying for, anyway, and I appreciate all of your prayers too!

Wish me luck - today I'm officially starting this "Resolutions" program that my gym is offering. For $95, you meet with a personal trainer every week for 8 weeks (very cheap as personal trainers go!) and go over your exercise program and what you're eating. I met with her for the first time on Saturday, and starting today, I have to keep track of what I eat (and try to eat better, of course), and I'm supposed to start going to the gym 3 times a week instead of twice (which means I have to try to go tonight - I usually just go on Wednesday and Friday). I'm hoping that this will finally get me to LOSE SOME WEIGHT! She told me if I stuck to it, I could lose 12 pounds over the 8 weeks. 

My resolution this year was to get more control over the parts of my life I *can* control. I feel like I've been spinning out of control since Laurel was born. That's one reason I decided to do the Resolutions program. So far, so good, so I'm in a good mood because I'm doing something positive!

Oh, I meant to add! I think Laurel turned the corner on the chicken pox, she was definitely more chipper yesterday! :-)

Laurel did a couple more things last night, I think she is finally learning what her arms are good for! I remember Mel posting something once like "I don't think Gabbi knows she has legs" and thinking, "Yep, that's how Laurel is with her arms." But I think she's finally getting it! :-) We *are* pretty excited about this, thanks so much for your support!

Bob called me to let me know that Laurel had her best PT session yet today, so I thought I would share! I asked him if he wanted to post it, but he's got an armful of Laurel right now. Anyway, they did a half-hour of tummy time and had her up on her hands and knees and she was actually relaxed enough to look around and she DIDN'T COMPLAIN (usually she fusses throughout the session, especially with tummy time)! Maybe we will get her to crawl yet?

Thanks again for your support and prayers, I'm still so scared to get my hopes up but maybe, just maybe, she is turning the corner...

Laurel is STILL working on that second tooth! Although it's much farther through than it was before. It seems like she goes several days where it doesn't really move, then it makes a big push for a day, then it stops for several more. At this rate she should be through teething by the time she's oh, 4 or 5...Her chicken pox is MUCH better now although she's still kind of snurfly (but her face looks SO much better...). It really wasn't all that bad, I think it was a lot milder b/c she had had the shot, even though she didn't have full immunity yet. It was just like a really bad cold with a nasty rash, she never even ran more than a low-grade fever.

We could use a few "speedy and pain free" vibes-Laurel has to have her tube-feeding button changed again at 2 PM. Sigh.

[In response to a question, so you don't wonder why the non-sequiter ;-)] We haven't gotten away too much - I had hoped that my MIL would be able to watch Laurel for an evening while we were in MN, but she was too busy and there were too many other things going on. We DID manage to duck out between feedings in Pittsburgh and go see "Harry Potter" - but we had to rush out and rush back, since we don't trust my mom with the feedings. Came back to find that once my mom had gotten Laurel in a position she didn't fuss in, my mom had stayed frozen in the same place the entire time we were gone for fear of getting her upset again! Geez, Mom, it's OK, if she does fuss she'll get over it! I really think Laurel would do a lot better with my mom if Mom would just relax some and realize Laurel isn't that fragile. I think Laurel senses her discomfort, so she's more fussy with her to begin with (normally Laurel is fine about being held by other people). Anyway - we do have a babysitter for next weekend but we're going to dinner with some other folks so it's not really time for just the two of us. I've been thinking we could use some, though! I was also bummed to talk to the ARC of the Piedmont this week and find out they didn't have any respite care, after having been told by someone that they DID offer it, even up to an entire weekend. I guess they used to, but not anymore.

Thanks, everybody! I think that was the worst one yet though...I feel like it's partly my fault b/c I didn't think to mention something sooner. She has had this little nodule of tissue that's formed under the cap that's been bleeding off and on and I didn't think to ask them if they could do something about it until after they had her on the table and had already taken the old button out. So she's lying there screaming (Bob and I were holding her hands) while they go off and look for a scissors and some silver nitrate. Then they get the scissors and the doc's just kinda playing with the bloody little thing, in and out, back and forth, I think to see how it was attached, but I was turning about 15 different shades of green. I STILL feel kind of queasy. Then they snipped off the nodule (I couldn't watch), staunched the blood, did the silver nitrate treatment, and went on with putting the new one in. But the whole thing on dragged on several times longer than it normally does. She was so exhausted that she was asleep by the time we got her out to the car, though. Bob took her on home, but I had to come back for a meeting.

UGH...well, at least it's over...and since she fell asleep, I guess the pain can't have lasted too long. Now I just need to pull myself back together and get ready for this meeting.

I hate waiting for the doctor to call back...

Finally heard back - we're supposed to give 1/2 oz. of Pedialyte every 1/2 hour for 2 hrs., then call again.

Of all the weird coincidences, Bob ran into the doc on call at the grocery store!

Laurel is doing much better on the vomiting front, although she has major diarrhea - thank you everyone who posted!

Laurel went to see the child development specialist for the last time today - she is "graduating" to the CP clinic. Much as I was expecting it, I'm still finding it hard not to be a bit depressed about this "graduation." The doc said that he would say that she has "mixed quadriplegic cerebral palsy" (as opposed to "spastic quadriplegic," which I've heard her PT say - I guess b/c she is not consistently hypertonic). She has her first appt with the CP clinic in 6 months; meanwhile, we have a small tome, "Children with Cerebral Palsy: A Parents' Guide" to read (and of course, she will continue her PT). I know this doesn't change a darned thing; it's all just labels, anyway. But I still feel a little sad.

Laurel threw up really massively this morning, so Bob is staying home and watching her for a couple of hours to see how she does. If she does OK, she'll go to the babysitter's this afternoon - if not, I'll come home so he can go in to work for a while. I sure hope it was just a random barf and not a sign of more illness!!

Well, Laurel is back to throwing up everything again. Bob's home with her now, I'm heading home in an hour.

Well, gotta go, I've got something I have to do before I leave.

Laurel is doing better today. She kept down a 50/50 Pedialyte/formula feeding this morning, we'll try the full strength next.

I have bitten my tongue SO many times on this issue, when people complain about their kids growing up. If I had any sense, I would again - but just once, I have to say this. Laurel is STILL functioning at maybe a 4-5 month level, and who knows when or if she will progress beyond that. I would give anything to have the problem of her "growing up too fast." As bad as having them grow up might be, I can tell you, the alternative is worse.

Bob (who was taking Laurel to the babysitter's today) just called to say that Laurel threw up just as he walked in the babysitter's door. So he is bringing her home, and I'm going to stay home with her today. She just doesn't seem to be getting better, and we are back to fighting about causes. :-( Sigh.

I feel embarrassed for asking, b/c I know this has come up MANY times, but diaper rash was never a problem for us. So I haven't paid the attention I should have to the answers. But after having diarrhea for almost a week, Laurel has a raging case of it! We've been using diaper cream, and also hydrocortisone cream a couple of times a day, but it's just getting worse. We've been told that we also should stop using wipes and use washcloths, and I guess we'd better, although the prospect of washing a couple loads a day of poopy washcloths isn't really appealing to us. Any other suggestions for how to get this under control?

I just realized that I've been wandering around for the past I-don't-know-how-many hours with baby poop on my elbow! Since the last time I changed Laurel, I've had my coat on and off twice, and taken the shirt off and stuffed it into the bag I take to the gym. I know that once you're a parent these things aren't supposed to gross you out, but I'm still thinking, BLEAH!! :-P

I'm thinking I might go wash my coat now...it was pretty overdue for it anyway...

Thank you so much for the hugs and prayers for Laurel, and the advice on the diaper rash! We decided to use several of the suggestions. I started wiping her with lotion and Kleenex after I read that suggestion, but I had Bob bring home some Viva b/c the Kleenex was kind of shreddy. We got some Gyne-Lotrimin, too, and used that and the petroleum jelly. She was already MUCH calmer for her diaper changes this morning than she has been.

Her first feeding stayed down this morning, so far, so good! (Although she's only been throwing up 1-2x a day the last few days, and the day is still young.) The diarrhea is as bad as ever. We thought about trying the rice water, but forgot to pick up any rice at the store, and I'm guessing Minute Rice wouldn't really work for that. And now it is snowing to beat heck out there. So that experiment will have to wait, I guess!

I think Laurel's second tooth is finally all the way through!

LAST NIGHT LAUREL DRANK AN OUNCE OF JUICE IN ONE SITTING! AND THIS MORNING SHE USED A REAL NIPPLE FOR THE FIRST TIME!

Then this morning, Bob put 10 ml (1/3 ounce) in a bottle with a similarly-shaped nipple. We've NEVER had any luck with that, b/c the nipples are harder to get liquid out of than the pacifiers (and we haven't had much luck with trying to poke more holes, etc.). (And yeah, [b/c I know some people read this that know something about feeding therapy] we've tried the Haberman feeder. She doesn't like the nipple shape.) But this time, she kept trying till she got it and sucked the thing dry! And then drank the pacifier that Bob also had for her.

Well, with Laurel nothing ever progresses totally smoothly. So I don't expect that next week she'll be drinking 6-ounce bottles. But she might someday! And now that she's showing more interest maybe we can think about sippy cups again (we started to talk about them with her feeding therapist before Christmas, and then she just totally lost interest and we could hardly get her to drink anything). It's been a long time since we made any real progress on the feeding therapy front and we are just so thrilled!

Laurel had a good day yesterday, too, and drank almost a full ounce from the bottle last night. She only wanted a half-ounce this morning, but I think she is coming down with Bob's cold (wah) and she's never as interested when she's sick.

I finally found the time to deal with my Pampers Points, only to find that there's nothing left that would be suitable for Laurel. Even last week there were still some things, but not now. I am so bummed - I had really wanted the software, we work a lot with Laurel on button-pushing types of toys and we thought it would be cool to try. I 'm also pretty PO'd at Pampers for not anticipating demand better, but Bob tells me I'm being ridiculous. Anyway, I guess I won't be ordering anything so if anybody could still use about 120 points, e-mail me.