Updates on Laurel: February 2002

[Posted by Bob] Today's news is that Laurel has another ear infection. It's her right ear again. I wonder why it's always the same ear. She was feeling a bit better last week, then she caught my cold, which I still have (and I started taking antibiotics for it last night). It seems as though we can't go for more than a few days without someone in this house coming down with something.

So, she's not feeling great right now. She was screaming her head off for about 2 hours last night before we calmed her down with some ear drops, Tylenol, and tummy massages. We got her in to see the doc this morning who - after cleaning out a large boulder of ear wax (yuck!) was able to see that her right ear was infected. She's been having an on-again, off-again rash for several weeks now. We haven't a clue as to what it is. The latest theory is that its a mild bacterial thing who's name I'm forgetting [note: it was impetigo]. Anyway, we'll try some antibacterial ointment and try keeping her feeding tube button a bit cleaner and see if that makes any difference. It doesn't seem to bother Laurel, so that's good.

She's been doing great on the juice, She's been drinking probably close to 2 ounces of juice a day - sometimes as much as an ounce at a time, sometimes about 1/2 an ounce. She's also been doing pretty good on solid foods - about a tablespoon at the feedings we try it (1-2 times a day). As her feeding therapist pointed out, since she does 8-10 sucks of juice before each swallow and since she doesn't seem to be choking or getting the juice down the wrong pipe, that means that her control of the back of her mouth and throat is excellent. It's really at this point, I think, a matter of working on her technique (her suck is still too far forward in her mouth and she doesn't really close on the spoon with the solid food very well), endurance and enthusiasm and I'm feeling pretty optimistic now that eventually that will all come. I wasn't feeling that way a month ago.

She's been doing okay on the physical therapy front as well. She complains a lot, and gets mad at being made to do things, but we still get good work out of her. Her body control continues to improve and she's starting to use her hands and arms to control her more actively when you are holding her. A couple of times now, when I've seated her on the couch or a chair while doing a couple of things, I've seen her teeter and the arm on the side she's falling towards comes out to break the fall. It's not enough to stop the fall completely and she doesn't try and push back up to right herself, but it's a start. Laurel's biggest obstacle is that the more frustrated she is, the stiffer her muscles get and the harder it gets for her to do things. When she's calm, she does some great stuff. But when things don't go quite right for her or when she isn't quite in the best mood, she gets fussy and then it all gets worse as a sort of bad negative feedback. The harder she tries, the most frustrated she gets, the more she looses control of those opposing muscles, the stuffer her limbs get, the harder it gets, etc., etc.

Oh, and we have her formula back up to the recommended higher concentration and she's looking like she's filling out again. She hasn't barfed in almost 2 weeks now. Having said that, and because she's about to start antibiotics for the ear infection, I'm sure I've just jinxed the weekend. Oh well. Also on this front, our pediatrician thinks that our insurance company is going to eventually agree to pay for the formula - even for the stuff from last year. That would be amazing.

We have a friend coming over on Sunday afternoon to watch Laurel while we go out to see Lord of the Rings. And we may have found someone who could watch Laurel overnight on special occasions (like our anniversary). We're meeting with her on Saturday.

I think that's all of the Laurel news that's worth telling.

Man, we are NEVER gonna get to see "Lord of the Rings."

Thanks for listening to me whine.

Thank you everybody who posted to me yesterday! I did manage to do a couple of things for myself yesterday.  While Bob did the 3 PM feeding, I went out shoe shopping, which was actually a pretty risky thing to do b/c I have wide feet and they're hard to fit. But I needed new navy shoes for work, and as it happens, I found a pair I really like. Then, I had gotten a whole bunch of stuff from Bath & Body Works for Christmas in a fragrance I didn't like, so I took it back and exchanged it for something I did like. When I came home, Laurel wasn't doing too badly and we decided to risk taking her out to a restaurant. She slept through the whole thing! We tried to watch a rented movie, though, and she woke up and started coughing and threw up and by the time we had everything cleaned up and Laurel calmed back down it was too late to watch it. Good thing it's a 5-day rental! I called my mom last night too, but if Dad's birthday was bothering her she wasn't letting on.

So, it wasn't *such* a bad day but I still really want to see that movie! This time when asking for a babysitter I'm going to ask up front if they would be OK with watching Laurel if she's sick. I feel like kind of a bad mommy for wanting to leave her whether or not she's ill, but given that she's been sick since mid-December I think for our sanity we need to get out!

Laurel is still feeling pretty rotten this morning - she keeps having these long, painful coughing jags, and we've been told we can't give her any cough suppressant b/c it would lower her seizure threshold (we can give her an expectorant, but it isn't doing any good). And the Augmentin she's taking for the ear infection is REALLY not agreeing too well with her tummy. But she's napping right now. I'm getting sick too, and I wish I could join her - but I need to start getting her next feeding ready in a little bit...

Good news - we got a babysitter for Friday to try again to see LoTR. Bad news - I'm sick! Hope I'm up for it!

I have been really sick with this lousy cold the last several days, but I'm starting to feel better today. I debated on going to work today (I didn't yesterday) and have to admit one of the reasons I decided not to was because I knew if I did, I'd be too wiped out to go on our date tonight! BAD Rochelle!! I'm not as well-rested as I'd hoped I'd be - I keep trying to take a nap but every time, after I've been asleep maybe 20 minutes I have another coughing jag. I'm giving up now. But, with drugs and coffee, I think I'm up for it...I mean, all I have to do is sit down, stay awake, and not cough too much, right? (And I cough a lot less when I'm sitting up than I do when I'm lying down.) It'd be nice to wait until everybody felt fine (Bob's not feeling so hot either, and Laurel's still kind of stuffy and throwing up some from the antibiotics), but I think LoTR *II* is gonna be out before that happens! So, we're planning to go!

Laurel did fine for the sitter - she saved her barf for me at the late feeding! Ugh, I have gotten barfed on the last 3 times I've fed her - I'll be SOOO glad when she's off the antibiotics (2 days to go). But she was great for the sitter! Although, it was a real cliffhanger whether we were going to get to go - there was a terrible traffic jam on the way here and she almost didn't get here in time! As it was, we just had time to go through the McDonald's drive-thru for dinner and snarf it down on the way to the movie.

It was good to get out and we did enjoy the movie - but I hope next time it'll be a little more leisurely!!

OMG, the woman in the office next to mine was just let go, effective immediately. She only had 14 months left till she retired. Our new ED tells me it's b/c there's not enough money in her program, but I know the old one would have looked around in other programs and come up with SOMETHING for her to do for 14 months. Her funding sources and mine aren't the same - but if I don't get some grants funded, I won't have enough either come July 1 and it's clear now how much mercy this guy shows. Erggghhhh....

We went to D.C. on Monday. Saw my nephew's condo (blagh - I had forgotten how disgusting college boys' living accommodations tend to be), went to lunch with him at TGI Friday's, fed Laurel at the botanical garden and then walked around it (unfortunately, she took a nap and missed it). Then said goodbye to my mom and sister who headed off to eat dinner with Marie's friend, and we went down to Potomac Mills, where Laurel was determined to do some more napping, but only on Daddy. Into the stroller. Wake up and cry. Out of the stroller. Asleep on Daddy. The whole dang time. I was tempted to let her CIO. (We waited a *long* time before we let Laurel CIO, but when we had gotten to the point that she was a year old and still never letting us put her down, we decided enough was enough. And with respect to her high chair, she's gotten the message pretty well, although we had a relapse after this stroller incident.) But Bob couldn't take the evil stares from passing strangers. Nevertheless, we somehow managed to buy a pair of sneakers for me for $20 and 5 Carter's sleepers for Laurel for $30, so I guess it was a successful shopping trip. :-) She had sure had it with the car seat by the time we strapped her in to head home, though. 

A Laurel update...

Her interest in oral feeding went right out the window when the barfing started with the stomach virus (that was a couple of weeks before the Augmentin). Since she's not throwing up as much as she was, I keep hoping for signs that it's coming back, but maybe that's unrealistic until we get the barfing under fuller control.

She's also not doing quite as much with her hands as she was at her best, but I think more than she had been before she had that really great period. Night before last, Bob was going "buh-buh-buh-buh-buh" with his finger over his lip, and that really got Laurel's attention. So he tried to do it to her, but she wasn't too thrilled with that and kept lunging at his finger with her mouth. She wasn't getting anywhere with that, so she grabbed his finger with her hand and shoved it in her mouth so she could suck and bite on it.

One thing we ARE pleased about is that she's been babbling consonants a lot more. We're getting a fair number of m's and n's and b's. Because she's never vocalized all that much besides crying and screaming, we've always made a big deal over her whenever she's said anything, and she has now learned that this is a way to get our attention when we've put her in her high chair (since she still doesn't go on her back or tummy without screaming, that tends to be our parking place of choice). Sure beats the temper tantrums she was throwing for a while! (Laurel may not be able to fling herself around, but she can kick her feet until her voice quivers...)

So, this is how things are now and really most of the time when you're not hearing about Laurel - not great, not terrible, just hanging somewhere between. I'm told this two-steps-forward-one-step-back-thing is pretty typical for kids with brain injuries, CP, etc. and it certainly has been for Laurel. But I've heard from several people wondering how she was, so I thought I'd tell you. :-)

So, Laurel's got this discharge coming from her vaginal area. It's yellow and cloudy. I'm guessing yeast infection? What do you think? Any ideas what kind of fun we're in for? Guess our doctor's getting a call in the morning. At least this explains why she's so fussy tonight. Or part of it. She also had a low-grade fever earlier today. Would that have anything to do with it, or is that likely something else?

Thanks for your help!

So I called the ped's office & had the nurse speak with the doc, but she said she didn't think the discharge was anything to worry about. Bob didn't see anything this morning. I dunno, I'm still dubious. But she told us to wait and see if Laurel continued to be fussy or the fever came back. They are open tomorrow morning. I hope we're not in for another night like last one, though - not as bad as some, I guess, but after trying for over an hour to get Laurel to settle enough to go in her crib I gave up and put her in our bed. She slept there, but restlessly. Coffee...that's what *I'm* grateful for...

Laurel had a better night last night and seems to be feeling better this morning. Bob thinks maybe the low-grade fever was a delayed reaction to the MMR shot - he read that 1 in 6 kids gets a low-grade fever 7-10 days after the shot (it had been 8 days). And as for the discharge, I don't know - but I haven't seen any more. She slept all right last night, and she seems a little out of it today but not overly cranky.

WHEW - I just finished Laurel's application for NACD. NACD stands for National Academy for Child Development. They do programs for all sorts of kids, but one of their specialties is programs for brain-injured kids. They assess where your child is in various areas and design a stimulation program to help them progress. Other parents who've done the program say that, although it hasn't been a total miracle cure for their kids, their kids can walk now when they couldn't even crawl before or they play with toys when they didn't before. Anyway, their application process involves filling out a workbook for a 6-tape series and filling out a LONG application with medical history and so forth. It's taken me just hours to do but I'M DONE!! So now to stick that along with a check for a big chunk of money in an envelope and gulp and hope that this does some good. We'll have to go to the Philadelphia area for her evaluation and for follow-ups every 4 months, and we're looking at probably 2 hours a day doing the program. Please pray this helps...

This morning Laurel was in her high chair and when Bob clapped her hands for her, she gave him a big smile!! We haven't seen one of those in just ages! :-) :-) :-)

I'm also happy to report that we haven't had any major barfages in a couple of days (although there have been a couple of spit-ups), and that Laurel has drunk the last couple of pacifiers of juice I offered her. That's a teaspoon each, not at all as much as she was doing, but more than she's done for several weeks!

Finally, I posted late last night, I've finished Laurel's paperwork for a program we're planning to enroll her in. From what I was told over the phone, my guess is it'll probably start in a couple of months. 

Man, I'm having a great day today! :-)

Why I Would Never Make a Good Stay-At-Home Mom, or How Not to Spend 45 Minutes:

Bob spent last night in West Virginia observing at the telescope there, so I was on my own. I've been taking a "nutrition class" (this thing has mostly been a pretty major joke) at the gym, and last night was the last one, so I got out late and then ran into someone I hadn't seen for a long time, so I got home even later. By the time my butt was in the chair giving Laurel her medicine before starting her "7 PM" feeding, it was 8:15 (fortunately her feedings had been running kind of late all day). Then I realized I'd left her juice pacifier upstairs, so I was going to take her and go get it. What I failed to remember was that, although she wasn't hooked up to her feeding bag tube yet, I was holding the tip in my hand. I stood up and started to walk away and, well, I managed to keep the IV pole from falling but not until a giant SPLORP of formula arced gracefully down and landed on Laurel's head. Who of course reacted to this as any sensible child would, by screaming hysterically. Well, I couldn't see any way out of giving her a bath, she was DRENCHED, especially her hair. Laurel unfortunately still shows only slightly more enthusiasm for her baths than our cat does. But I plopped her down and frantically prepared one. We survived the bath, although the drying was particularly not fun since I had to leave her on the floor for a minute while I dried myself off - we always get in with her, it helps a little. But then as I had her on the Changing Table of Death putting her in her jammies, the zipper stuck. Couldn't get it unstuck. At which point I felt an uncontrollable urge to scream and did, which of course sent Laurel into further hysterics. Pried her out of the jammies, put on some other ones, plopped her into her high chair, finally got some clothes on myself (yes, I was still buck-naked, and it was COLD, baby) and cleaned up the mat that had caught the formula that didn't land on her or me. It was 9 PM when my butt was again in the chair to feed Laurel. I must have spent the first 15 minutes apologizing to Laurel...and ugh, all because I was by myself. Since if Bob had been home, I'd've said, "Sweetie, could you do me a favor, could you get Laurel's pacifier for me?" and he'd've said "No" and then done it. (Don't ask me why the "no" first.) Blagh. At least this morning a friend from work came over and helped, so we didn't have any further comedy. But man, after last night I'm feeling like they're going to take my mommy license away soon!

It's been a bad month or so but I think we might be on the upswing again. For several weeks while Laurel was throwing up with the tummy bug and the antibiotics, we just weren't able to get her to take anything by mouth at all, but she's started to show some interest again and has finished a few 1-tsp pacifiers. And is definitely interested in sucking on fabric and people again. :-) She's been babbling some and is also getting better at catching herself when she's sitting and starts to fall over!