Updates on Laurel: March 2002

March 1, 2002

Yesterday Bob told me Laurel started sucking when she saw the juice pacifier! Which says some great things about her visual development (remember, she has cortical vision impairment) as well as her understanding about what you do with the pacifier! :-)

Laurel's been well for a couple of weeks now (quick, knock on wood!) but is being very slow to recover her interest in drinking juice. She sat with no support from me on my lap for two minutes yesterday afternoon, so that was pretty cool. An occupational therapist came and evaluated her yesterday and wants to work with her (she'd mostly work on Laurel using her hands more), but it's causing me real headaches b/c her only open times are on Tuesday and Wednesday, so I'd have to move my day home with Laurel. And it's really turning out that neither Tuesday nor Wednesday are as convenient for me as Monday, so I'm thinking of asking our early intervention service coordinator whether there are any OTs available that can work on Monday. I've been feeling disappointed that it mostly seems like she hasn't been making much progress the last month or so. And we keep seeing breakthrough seizures when she wakes up (we should get a new blood level for her seizure meds next week). I just keep trying to take one day at a time. I filled out the paperwork for her to start a new program at something called the National Academy of Child Development (it's a home program, but we'll have to travel to the Philly area three times a year), but it'll probably be a couple of months before we start that.

I have some leave time that I need to use so I'm going to take Friday off (and Laurel's still going to go to the babysitter). I'm really looking forward to it! It's supposed to be in the upper 70s so I think I might go for a hike! Bob also found us a babysitter for Saturday night, so I have to decide where I want to eat for my birthday. :-)

Are insurance company people BORN insane or do they go that way slowly over time? No offense meant to anyone here who may work for an insurance company. But...

As many of you know, Laurel is tube-fed and is on an amino-acid-based formula for multiple protein intolerance. Without this formula, she throws up 5-6 times a day, but it's very expensive (I think we're currently spending about $360 a month buying it on eBay, and it would be close to twice that if we bought it through the local pharmacy). Our doctor wrote a letter to our insurance company saying she felt it was medically necessary back when we first put Laurel on it, and they wrote back saying it wasn't. At Laurel's one-year checkup, the doctor decided we really needed to increase the concentration, so since this was going to cost us even more, she went back to battle with the insurance company again. A couple of times she's reported that she thought she was close to victory, but she called yesterday to say that they had finally told her, "Well, we don't care what YOU think, the family clearly doesn't want it since they haven't written us." WHAT???? Oh, sure, $360 a month is pocket change to us, we don't even bother to bend over unless we've dropped at least a thousand! YEAH, RIGHT!! Well, nobody ever told us they needed a letter from US, so we'll sit down and write one. Although I'm sure that, having done that, they'll come up with some other lame reason. Cheapskate rackin frackin #@$%^!&*!...

Thanks to you guys for the ideas for Bob for presents! I just opened my presents a few minutes ago. Bob tells me that the "Dragon Prince" book was Marina's idea, the Satsuma gift pack was Shannon's (party.of.five) (oh goody, now in a dark room you won't be able to smell us apart ;-) ), and the foot massage and facial ideas (or something like them) came from several different people. I also got a coffee mug covered with facts about caffeine (LOL) and a mini Zen garden. I also got flowers and balloons! And the day off from taking care of Laurel. :-) This was so much fun because I didn't know what to expect! I mean, after 14 years together I know the kinds of things Bob gets me - but I didn't know what *you guys* might suggest, and Bob had told me he had used three ideas. And they are great gifts! I am *definitely* looking forward to that foot massage and facial!! Thanks again!

I'm depressed, and Bob went to bed mad at me as a result. I've been depressed for weeks now...Laurel had had that period of fast progress but she lost part of it and it's just been glacial lately. At the beginning of the year, I was feeling like maybe this was going to be Laurel's year but I don't feel that way anymore. I know she is still making teeny bits of progress. But she's also classed as being about a year behind developmentally now. And I'm feeling pretty hopeless. It's mostly been hope that's kept me going. But I feel like I've got to start learning to accept that my little girl is always going to be a little girl, no matter how big she gets. And it's just tearing me up. But hey, you know, life has to go on. I'm trying to find value for myself in other things, like work. Work is really helping me stay sane. I don't want you guys to think that because Bob went to bed mad he hasn't been at all supportive. He's tried, that's why he gave me such a nice birthday. But I think it also makes him angry when I say things about Laurel he doesn't want to hear. I understand - the shoe's been on the other foot, too. But it makes it hard for us to talk to each other when one of us is feeling discouraged. I'd say maybe I could use someone else to talk to but I tried counseling and I tried talking to a couple of mothers of older kids with disabilities and nothing has really seemed to help. Guess I'll have to muddle through this on my own.

We need LOTS of get-well-quickly vibes...looks like our weekend plans are about to go up in puke...

WOOHOO!! She hasn't thrown up since this morning, AND we have her NACD appointment!

And the folks from NACD called, and we have an appointment for her at their PA office for June 14. They called a couple of weeks ago and said that it would be sometime in June but they weren't sure when yet, and I was worried b/c Bob's traveling at the beginning of the month and I have a ton of deadlines at the end, but since it's in the middle it works. I'm so happy to have that scheduled! And since it's on a Friday and their offices are only 2 hours from my BIL, maybe we'll make a weekend out of it!

Anyway, Miss Laurel and I are BOTH feeling much better this afternoon, thank you everyone!

Well, the throwing up wasn't the end of it...Laurel screamed all last night and she's screaming again this morning...

I sure wish I'd canceled the hotel reservation yesterday...she seemed just great yesterday afternoon, but lesson learned, I guess. Wah.

We just got back from the doc's - turns out she has a bad ear infection. The weird thing is we were REJOICING at this because 1) the other things we were imagining are so much worse 2) she usually responds very quickly to antibiotics, so we might even be able to salvage some of the weekend. It might even explain the throwing up, since she's thrown up with ear infections before, although we can't figure out why she seemed so perky yesterday afternoon. But anyway, PHEW. Bob's going to pick up the antibiotic prescription in a bit, and we'll just have to play the weekend by ear. One possibility we've thought of, if she's not too bad (and she seems better already since the doc gave her some ear drops), is to go ahead and stay all three of us in the hotel tonight and then drop her at Jen's tomorrow.

We've officially given up. Laurel's running a fever, the Tylenol's not cutting it, and the Tylenol and the ear drops don't really seem to be dropping her misery level. I just couldn't see loading her in her car seat and taking her anywhere, and I sure wouldn't feel good about leaving her. I've managed to talk the hotel into rescheduling for next weekend (it was too late to get our money back) and Jen says she could do next weekend, so I guess we'll try again next week. Wish us luck, that that works out...

Well, it's looking like a very good thing we decided not to go anywhere. Bob's suddenly having a severe case of what we call "intestinals" around here, and Laurel's barfing bright yellow (got another call in to the doc on that one, wish he'd get back to me). Guess it's good I took the day off work, anyway...

The good news: the doc wasn't worried about Laurel. The bad news: the puke fairy has hit Bob full force!

Both my sick puppies are in bed, but Laurel's not quite asleep. I hope she gets that way soon. I have a hard time going to sleep knowing she's not. And now poor Bob's up again. Ugh, what a night! I sure hope Laurel's asleep soon, I have to get up in about 4 1/2 hours to feed her again. I only got 4 1/2 hours of sleep last night too. I'm soooo tired...But I'm still in a lot better shape than Bob, so I told him she was mine until he was up to it again. I think Laurel's finally settled. Good night!

[Posted by Bob] 

Of course, this isn't shaping up to be the best anniversary weekend ever because I've been pretty much completely bed-ridden for nearly 16 hours now. Rochelle is a champ through it all - taking care of Laurel, who's feeling much better as well as me, who's starting to feel like I might be allowed to feel better someday. Still, as bad as I feel this weekend, it's much better than last year, when Laurel was not doing well (I can't remember exactly when her last hospitalization was, but it was around this time). I don't think we celebrated our anniversary until Memorial Day weekend last year. So, we're all definitely doing better this weekend, even though I feel like I've been run over by a truck - every hour and half or so.

March 30, 2002 (12:19 PM)

[Posted by Bob] 

I am feeling somewhat better. I kept some applesauce down about an hour and half ago. But I am now running a fever of 102, so I called my doctor's answering service and spoke to a triage nurse. I'm allowed to take Tylenol now so that should help. The most interesting thing, though, is that she said that there is a GI bug going around that seems to be hitting men much more often than women. Hasn't that been the trend in the barf fairy reports here on the board lately? I sure hope so because it makes it less likely that Rochelle will get it. I wouldn't wish this off on my worst enemy.

Laurel is feeling better but I think the antibiotics are really hitting her hard with the diarrhea (and maybe that's some of the residual GI bug too - but her fever has gone).

Laurel's much better, aside from the diarrhea and still just seeming kind of lethargic (heck, that could be the diarrhea). Bob says he's "sore, but better." Hopefully next weekend we'll get away - although I'm kind of worried about the diarrhea, if it's the antibiotics she's still going to be doing this next weekend (we've been giving her rice water but she only seems to be able to tolerate it in small amounts, so it's helping some but not stopping the problem).