I guess I was getting a little punchy last night when I was filling out the form for the allergist visit Laurel's going to have today. By the time I got to the last page of the 8-page form, where it said "current occupation" I put "child," "how long have you worked in your present occupation" I put "2 years," and "previous occupation" I put "fetus." I wonder whether the doc will say anything!
Joking aside, I'm nervous about this appt. She's still waking up coughing every day so I think we need to do this, but I'm pretty sure he's going to do scratch tests and I'm SO not looking forward to that, poor baby!
My day - ugh!
OK, first off, not 10 minutes after I posted to the other board, my computer at work said sayonara! In fact, the last thing I saw before the Blue Screen of Death was this board. I'm told that my disk drive is one of "a bad batch" and that all of the others of that type in the office have failed already. And that my computer (or any of the workstations) had stopped being backed up a while ago because it was taking too long. There might be a backup from a month or so ago. "What's the chance you recently backed up all your data on the server?" Um, none, because I didn't know I needed to! I guess they *were* able to get the data off the other drives that failed so there is hope, but I won't know for sure until tomorrow.
Meanwhile, I know you're wondering how Laurel's allergist appt went! Well, the scratch tests were predictably horrid - she cried almost the whole time we were waiting for them to "develop." And they were all negative! So that's kind of a good news/bad news thing, since it means we still have no idea why she's waking up coughing every day. On the other hand, she tested negative to milk, soy, peanuts, wheat, and egg white! I know from my own experience that a negative scratch test doesn't always mean you're not allergic, but hopefully at least she's not seriously allergic to any of those things and I think we are going to start introducing some milk-based formula and see how she does. Anyway, since she didn't test positive for anything there's nothing the allergist can do for her.
On a disturbing note, when the doc first came in he said her eyes looked like she had just had a seizure! I had a hard time getting him to elaborate but he finally said that her eyes seemed glassy and that she wasn't looking at anything, and that at first she seemed unresponsive. I *know* she hasn't been having the kind of seizures she used to, those would be a little hard to miss, but now he's got me worried that she's having some other kind! Although I keep reminding myself as I start to spin off in panic mode that even if she is they are clearly not impairing her development the way the infantile spasms did. I had seizures myself when I was little - the term they used at the time was "psychomotor," now I think they're called complex partial, I would cry inconsolably and be unaware of my surroundings. They were controlled with medication and by the time I was 10, my EEG was normal and I was able to go off it. Now he's got me racking my brain wondering if there's anything like that going on with Laurel. She *was* crying hysterically right before he walked in. On the other hand, maybe her eyes looked like that because she was crying hysterically? She has been in such a mood with teething lately - we've had one more tooth break through and three others that have moved some.
Oh, on a final note, my watch broke at the allergist's office. Yessiree Bob, I'm having a great day!
May 9, 2003
Well, I'm excited!
This evening, tomorrow and a little bit of Sunday I'm going to a "Wildflower Symposium" (I've always been into IDing, photographing and growing wildflowers). I'm even staying overnight tonight at the resort it's being held at! (about an hour from here) I did this last year too and it was SOOO fun, and I'm looking forward to a couple of hours of "me" time tonight too - I'm taking my beads with me and hoping to get a pair or two of earrings made with all these beads I haven't had time to do anything with. I feel SO guilty about leaving poor Bob alone with Laurel though, especially given the mood she's been in! (I swear every one of those remaining teeth is moving...) I will have to make it up somehow. (I know what his answer would be as to how but I'm not going to print it here even with the bad language filters off. ;-)
My computer at work is still down (the last word was that the partition on the drive was gone and that the data was retrievable but that it might have to be sent out of town) and I won't be home again till late tomorrow night so I hope everyone has a great weekend!
I had a good time! Friday night all we did was instructor introductions and workshop sign-ups so I had a bunch of time to myself. I got one of the resort's hiking guides and went on a short hike to a waterfall that was billed as a "great family hike." Hmm, maybe if you have kids with steel legs and suction cup feet! The first part of the hike was straight down a hill and for the last part of the hike, the trail became one with the creek. It was a pretty waterfall but not a hike I'd *ever* take small kids on. Then I stopped for another short hike to an overlook, went and got some dinner, and went back to my room. I worked on some jewelry but only got one pair of earrings finished - it had been so long since I'd done anything it took me a while to get the hang of it again! And no, I'm sorry, I forgot the mask! But I did remember some bath salts and when I saw there was a whirlpool tub I *had* to take a bath. Unfortunately the hot water ran out before the jets were completely covered! It was a little better when I got in but still pretty splattery so after I played a little with putting my feet in front of one of the jets I gave up on it. A fine evening overall though.
The symposium itself was a little mixed - the bird walk I tried to go on got rained out and another workshop was kind of boring. But I enjoyed the native plant landscaping lecture and walk, the moth workshop (yes I AM a nature geek) and most especially, the one thing I went back for on Sunday (I drove home Saturday night and drove back Sunday - we can't afford for me to stay at that resort two nights!) which was a wildflower drawing workshop. I love arts and crafts and have taken classes in various things off and on but nothing since Laurel was born, so I thought this would be a fun way to at least get to do something artsy for a couple of hours. I drew a trillium and part of a huge foam flower (much larger and happier than the ones in my yard, LOL) and the instructor was very encouraging! She said that I had a feel for it and that when and if I found that I had more time and wanted to work on it more, the seed was there. I've attached a scan of the trillium drawing.
So anyway, I had fun! I definitely hope to get to do it again.
Well, crap. Literally. We were hoping to transition Laurel to a milk-based formula since she got that negative on the allergy test. We were following what seemed like the one useful piece of advice we'd gotten from that lame nutritionist we saw a while back and starting out by using a partially-hydrolyzed formula (Nutramigen). If that went OK, we were going to switch her to Pediasure. It seemed like things were going pretty well at first, although we were starting to get concerned that she was having extra gas (it's hard to tell since she's been teething because that gives her extra gas too). We had gotten up to about half Nutramigen/half Neocate. But she started having some diarrhea yesterday and today the poor kid has gone *12 times* so far. So I think this is the end of the experiment. Her bottom is really raw (I think just inside is too and we've started giving her hydrocortisone suppositories) and she is SOOO miserable. (And as if teething and diarrhea weren't enough, she's got another canker sore under her tongue. The good news about this one is it's too far back for her to bite it, but the bad news is it's also too far back for us to get the Lidex on it so I guess we'll have to wait it out.)
*Sigh* I guess we will get her straightened back out and then see if we have any better luck with soy. Unfortunately they don't make a soy formula for older kids (there's no soy Pediasure equivalent that I know of) but if it works we *could* make something up like that mom we met near Pittsburgh does, with fortified soy milk and different pureed foods. It would be a bigger PITA but we're so tired of the expense and the constipation with Neocate.
Of course, this leaves us feeling *really* confident about the other results of those skin tests. Not. Especially given that she's *still* coughing...
Laurel is doing MUCH better today since we stopped the Nutramigen last night - she's still cranky but she's only had two small poops - so I'm pretty convinced it was the formula.
OK, this is a new one - now they're worried about Laurel being SHORT!
Anyone who has ever met Laurel knows that this is not a very likely problem. But apparently at the endocrinologist's this morning (where she went for another blood draw to see if she can come off the hydrocortisone yet - I didn't go because I was having my own blood drawn as part of a free health screening my office was offering) they only measured her at 34" so they're worried. I think more likely that her spasticity caused them to get a bad measurement (that happens pretty often), since we had a measurement at 34.5" months ago and she's outgrown another size of clothing since then. But now they are going to check for growth hormone as well as ACTH in the blood sample. Which means that it will be weeks instead of days before we have results, argh! They did say that a deficit in growth hormone can cause problems with spasticity as well so I guess (aside from my impatience) there's no harm in letting them look. But I'll be surprised if they find anything!
In other news, tomorrow we are going for her IEP (Individual Education Plan) meeting for her preschool this fall. I'm nervous about this because I've heard awful things about the schools not working with parents and the whole thing being cut-and-dried before the parents ever walk in the door. Her speech therapist (who works at the school and says she will be able to work with Laurel some on feeding almost every day when she starts school :-) ) thinks it's a pretty good system here though so let's hope!
BTW, she is still having some problems with teething, leaking and diarrhea (now I'm not sure WHAT to think about the diarrhea)! But overall has been in a better mood than she was and was a pretty good girl when we went for a couple of scenic drives with my in-laws (who just left this morning, they've been here since last Wednesday). I can still see a canker sore under her tongue, too, but she's being better about taking food than she was so I guess it's time to hop on that horse again. Her NACD re-eval is in only another month but we haven't gotten much done these last 3 months so I need to write and ask what we should do about the appt. I've been feeling pretty discouraged lately, it seems like every time we get some momentum going something else goes wrong! But, we just have to start again and hope this time we catch a break for a while.
Oh, and I *still* don't have a computer at work, but this morning I jumped up and down till I got a laptop.
We thought Laurel's IEP meeting went pretty well! We were impressed with the positive attitudes of the teacher and the OT (we already knew that Laurel's ST has a positive attitude :-). We're excited about her goals, especially the feeding goals (stuff like eating 2 oz. of puree and 25 bites of solid at every feeding), interactive skill goals (like participating in circle time and taking turns) and communication goals (consistently making a greeting, pointing to pictures in a book and choosing from up to four pictures of objects). We *were* disappointed that the PT wasn't there (she was sick) and so she is going to do an evaluation in the fall and we'll go over those goals then. In some ways, I'm happy that it's working out that way because that will be more accurate than her trying to base goals for the school year on what someone else wrote in February (as the OT had to), but on the other hand I kind of wanted to see what we were in for because I'm nervous about PT. I've heard that's the one that tends to line up the least with what was done in early intervention because in school, therapy is done based on what is useful educationally and things like crawling don't really fit into that scheme. I get the impression that a fair number of parents end up paying for private PT. She will also get vision services and I'm not sure what that will consist of, but she'll get an evaluation for that in the fall as well. The other big unknown is her teacher - the current teacher is moving and we haven't met the new one yet. So, there are a bunch of things we don't know but it looks good so far.
Well, yesterday was a long day but today's doctor visit was mostly pointless. (warning - gross)
In one of the worst cases of bad timing EVER, yesterday morning we gave Laurel a Babylax because she'd been constipated for a couple of days (what we got by experimenting with not giving her Miralax - we're starting to suspect it might be the cause of her gas pains). She had the usual round of several poopy diapers and we schlepped her off to the babysitter in what seemed to be a pretty decent mood. But by time for her 11 AM feeding, not only had she pooped a bunch more, she'd thrown up a couple of times, so the babysitter called and Bob went and got Laurel and took her home. She had it coming out both ends for several hours, but finally stopped throwing up around 2:15. We thought we were totally on the upswing but then she had more diarrhea last night, and when I saw her last diaper (maybe 9 or so?) I totally freaked because it had blood in it. So I called the ped's answering service and the nurse told me she thought the doc might have us go to the ER, but the doc voted instead for having us come in the morning unless things got worse. Good call because she didn't poop any more last night, and I was waffling on whether it was even worth it to keep the appt when she pooped 3 more times this morning. So off we went. But the doc didn't find anything (and I guess the nurse didn't see anything in the sample we brought) so it turned out to be one of those "she looks great" things. Don't know what the blood was for sure but it might just have been from irritation. She mostly seems to be feeling a lot better today, and I'm *hoping* she'll be fine tomorrow because we've lined up babysitters and we're supposed to go to King's Dominion for Bob's birthday! (My other worry besides her being sick is that she might have given it to her speech therapist when she visited on Thursday, because she's supposed to be one of the babysitters.) Bob was feeling kind of rotten last night too, but he's feeling a lot better today.
Anyway, just thought I'd let you guys know we've been having some excitement here, and if you can spare a few "get well" and "stay well" vibes, we could still use them! Thanks!