Updates on Laurel: August 2003

Still laughing at our little limits-tester...

Yesterday afternoon, Laurel was getting really worked up over being in her high chair while Bob was getting her feeding ready, and against my better judgment, I picked her up. (I hate to encourage that sort of thing but I also hated to have her be in orbit when Bob started the feeding, especially since we've been having trouble with her throwing up and with her button leaking more since she's been on the antibiotic, and crying makes both of those things worse too.) Well, that calmed her down except that then I sat down with her in front of the computer (which I'd been working on but she knows isn't likely to be entertaining) and she started to cry again. I told her, "If you keep crying, you're going back into your chair." "OK, Laurel, one more warning and that's it." "All right, you're going back," at which point I turned the chair around to get up. And she IMMEDIATELY stopped crying, flashed me a little smile and started kicking her legs (something we often encourage her to do).

I should probably be aggravated, but this makes me really bizarrely happy. I guess because it seems like kind of a normal toddler thing to do, and "normal" for us is refreshing. We've traveled so far from the days when we'd spend 10 minutes trying to get her attention (and not succeeding). She is turning out to be a little character and we're just loving it.

By the way, I'm hoping to write later about her NACD re-evaluation and new program, I just haven't had time.

Laurel had a follow-up about her g-tube button leakage this AM. First off, I have to say we may have set a new record for waiting for a doctor when we had an appt - just a little short of two hours! UGH! But anyway, we told him that things just really hadn't gotten any better over the two months since we saw him last. (I don't think I even posted about that one, he just said, "Let's stay the course and see how it does.") And that the area around her button had also seemed more sensitive for the last week or so. We think it's probably because it leaked so much while she was on the Amoxicillin (because antibiotics give her gas, and it leaks more when she has gas) but he was worried that maybe there was another infection developing (that the Amoxicillin might have missed, since I guess it's not very good for skin infections). So he put her on Keflex. Whoop-ti-do, we made it one whole freakin' day without antibiotics! He says if that doesn't help the leakage (I would be ASTOUNDED if it helped the leakage, but I guess the idea is supposed to be that maybe there's an infection there that's keeping it from healing) then he thinks the next step should be to try the next size up button (with a slightly wider peg and mushroom [the wide part on the inside that holds it in]). So she has another follow-up appt in three weeks, which unfortunately means she's going to miss the first day of school. :-( I wish we could just get on with the next step, but I guess it's better to be safe than sorry. We're bummed though, because here we'd thought she'd be over the effects of the antibiotic by the time we went to Ocean City this weekend. That's what we decided to do for our vacation, BTW - we're going to Ocean City, MD for a long weekend, then spending three days at home not working while Laurel goes to the babysitter, then going to Lancaster for the get-together. I'm not totally excited by it (I really love to travel and I'm missing going somewhere more exotic), but it's relatively cheap and gets us some "us" time, which we felt we really needed.

Anyway, that's today's news. We're seeing a dietitian in Richmond in the morning so I'll probably have some more tomorrow.

So we saw the dietitian this morning. Her suggestion is to try to gradually transition Laurel to about half Neocate and half pureed foods (she'd also be supplemented with a multivitamin and calcium). It doesn't seem like we gain much in terms of decreased volume - in fact, with the extra water she'd need I think she ends up with more total volume - but hopefully if it's a bit thicker it will help it stay down (reason I'm worried is because if we go to four feedings instead of five like we hope to, she'll be getting more at each feeding). The big reasons to do it are that it would be cheaper, and we're hoping that a more solid diet will help with her constipation, gas and reflux. I expect we will give it a try - but not, as we told the dietician, until we've gotten past this next wave of stuff with Laurel's button (antibiotic and possible impending procedure). I hope that won't be too long!

My mother's not going to die of cancer, because I'm going to kill her first! 

OK, not really. But I talked to her last night and I'm SOOO frustrated with her. You might remember, I took her to have a biopsy on a spot on her nose when we were in Pittsburgh about a month ago. She was supposed to call me when she got the biopsy results and she hadn't so I called her a couple of weeks ago, and she still hadn't gotten the biopsy results but she was freaking about the fact that the mammogram she'd had the next day (after we went home) had a spot on it. Apparently the doctor had called to tell her to get an ultrasound, but the radiologist's report said that it was probably benign and to recheck in six months. She said she was going to get clarification, and I told her to call me when she did. And so these last couple of weeks have gone by and nothing. So I called last night, and she said she had set up to get the ultrasound but then canceled because she couldn't deal with that in light of the fact that she had finally gotten her biopsy results back and it was a basal cell carcinoma. Which the doctor had said it probably was and that it wasn't terribly dangerous but that it needed to be taken care of. Anyway, she has already made and canceled one appt at the cancer center, and hasn't made another one yet. Now she's saying, "The scab from the biopsy fell off and now all I can see is a scar so I'm not sure I have to do anything." ARRRGGGGHHHHHHH! WRONG! I so wish we lived close enough that I could drive her to her appts. But she won't move here, we can't move there, and 5 1/2 hours is too far to drive for every appt! All I can do is keep calling and nagging and ask my sister to do the same. I'm so frustrated! I don't even *get* her, if it were me I'd want that thing taken care of! Thanks for letting me vent...

Well, our vacation is over...it was a pretty mixed bag! It was drizzly and dreary the first day we were in Ocean City. We got the bright idea of driving up to the Rehoboth Beach Outlets (in Delaware - but mind you, we were staying a few feet away from the DE line. I walked over to DE to get sugar for my coffee!). We had no idea how long that was going to take, the traffic was awful! We did pick up some nice outfits for Laurel at the Oshkosh outlet, but by the time we got back to the hotel it was very late. We fed Laurel and ate and went to the boardwalk for a little while, but it was so late and she was too tired to go on any of the rides. The next day we went to the beach, but it was chilly and breezy and I was the only one brave (or foolish) enough to go in the water. The surf was rough too, so I gave it up pretty quickly. Laurel was miserable, actually, until we wrapped her in a beach towel - then she went to sleep. At least that night we had more time for the boardwalk, took Laurel on the merry-go-round (which she liked) and the Ferris Wheel (which she didn't, surprisingly - we think it was again because it was cold and windy), and then she fell asleep in her stroller and we took a really long walk, trying to find the place we'd stayed years ago (we didn't). Monday started out awful and we were prepared to bail on the nature cruise to Assateague we'd planned but it stopped raining and the sun came out as we started on our way. That was probably the most fun of the weekend - we saw the ponies and got out on the island and waded around with nets to find things in the shallow water (mostly a disturbing number of comb jellies, but I did get some hermit crabs too) and on the way back, looked at the things we'd caught and some other animals they had for us. But Laurel slept through the whole thing! Then home for the beginning of Phase 2...

So Laurel went to the babysitter's Tuesday, Wednesday and Thursday, and we also got a babysitter for Wednesday night. Mostly we did a lot of van shopping! We test drove a Honda, looked at a Kia and then drove a Toyota again (we drove the Toyota and a Mazda a while back). We've definitely decided we want a Toyota (the recent recall notwithstanding - at least they should have them fixed by the time we get ours ). Wednesday was probably the most fun day, we went to an Aboriginal art museum (would you believe one of the major collections of Australian Aboriginal art in the world is here?), which wasn't to our taste but it was interesting. And we went mini golfing and looked at some carpeting. We've decided we're going to really go nuts and buy carpeting for the basement too! It helped a lot to find out that the store was going to have a sale with no payments until January 2005. We've been just dying to replace the 24-year-old brown shag in the basement but weren't sure about doing that and the van, too. But we think with that sale, we can do it. We haven't really done anything to the house since Laurel was born and that carpeting is very high on our hit list (and honestly cheaper than a lot of the other things we want to do, like remodel the kitchen and replace the deck with a screen porch). Anyway, then Wednesday night we went to dinner and to see "Seabiscuit," which is very good! Thursday was probably the worst day of the three at home - we wasted too much time in the morning playing with the Toyota (they hadn't had one ready to test drive before then) and the hike we took in the afternoon turned into something of a death march as a result. It was hot, too. But it did feel good to have reached a decision about the van. We're moving forward as fast as we can now, there's a backlog for them and our '91 Escort is really feeling like it's not much longer for this world.

Anyway, Phase 3 was the trip to Lancaster for the November 2000 board get-together. For us, that didn't go so well - it seemed like we kept zigging while everyone else was zagging. We hadn't even left the hotel yet to meet everyone for lunch when it started to POUR. We decided to wait it out and feed Laurel, and when we were done feeding her the rain had lightened up a lot so we went over. But then it poured even harder! We all hung out in a food pavilion until the rain lightened again. Other folks said they were going to go back to the hotel, and we were going to go on some rides but when we stepped out we realized that it was still raining and the rides were still closed. So we went back to the hotel. But everyone else stayed! It was probably just as well for us we went back, because Laurel was getting cold, so we warmed her up and she fell asleep. After we fed her again we called to see what was going on and everyone else was back at the hotel! We stopped by to see them but decided to go back to the park while they were waiting for someone. We went on five rides, but Laurel didn't seem to be having a very good time. Then we went to get something to eat but found most of the eateries were already closed (at 6:20)! So, Laurel and I went back up to the hotel and Bob went off to get some Arby's. By the time he got back, it was picture time and then everyone else went down to the pool. We went back to our room, snarfed the Arby's and joined them. Turned out the pool was too cold for Laurel, though (I SWEAR it seemed warmer when I'd checked it earlier!), and the hot tub was too hot, so Bob and I ended up taking turns with one of us sitting in the hot tub and the other one holding Laurel with both her and our legs dangling in it (that put her right to sleep).

So that was it for Saturday. I think Sunday was the best time for actually talking - we sat in the hotel pool lobby while most of the husbands took most of the kids to a playground. And we had cake to celebrate one of the older kid's birthdays. Then we all took off. Bob and Laurel and I stopped at another set of outlets for more clothes for Laurel and some kitchen stuff and then went to the PA Renaissance Faire. It's HUGE! I was last there 17 years ago and I couldn't believe how much bigger it was! The weather was pretty warm though, and as I found out after the fact, I like ren fests a lot better than Bob does. He was bored and grouchy for a lot of the weekend, so it wasn't really a great end to our vacation.

I'm feeling kind of let down now - I think partly feeling a little disappointed about the vacation, and partly because now we have to deal with all those things we were putting off till after the vacation, like Bob going on a diet and us really getting going with Laurel's program. I did do a lot of program yesterday. It felt good that I didn't just sit around being depressed and putting it off, but on the other hand, a couple of the sequences made her cry so that stunk. She didn't seem to be feeling very good yesterday - actually, the last week or so she's been in another "Laurel doesn't seem to be feeling well but we're not really sure why" state. She *is* getting a 2-year molar (never mind that she still doesn't have all of her other teeth) and also seems to be having some trouble equilibrating digestively after the last round of antibiotics.

Anyway, the program. As long as I'm writing a novel, what the heck. I was kind of disappointed in the program this time because we got a lot of stuff back that had been dropped from her program previously, like mouth stim (rubbing a little sponge on a stick around the inside of her mouth) and arm bouncing (moving her arms up over her head with a bouncing motion). And, heaven help us, the creeper. I finally finished the creeper vest but it was a real disaster - she just sits there and cries. We're supposed to rig up a sort of sling and try again. We did get a couple of new things. We're supposed to lay her upside down on a slant board! We're dubious, but we'll try. Probably the most exciting thing was the addition of flashcards. We had to buy a certain kind with big pictures (made by DK and discontinued, so it was a little work to track some down but I've gotten three sets). We show three of them to her three times, and then ask her to look at a certain one ("Look at the pants"). She got it three out of four times at the office, and definitely got it one of the two times I did it yesterday (the other time she was having a hard time fixing her gaze on anything). She's been pretty attentive to it! So, this is exciting because if we can get this down we can start communicating with her better. One encouraging thing that Ellen at NACD said was that "The cognitive piece will be easy." She also stressed again that Laurel is probably bored a lot. Yeah, we know, believe me, we know! She's hard to entertain, but we're trying. I've been going to the library on her behalf and getting videos and taped stories and books. I wish our librarians had better taste in videos, though! Anyway, I guess I left the NACD appt feeling that Laurel was making a lot of progress cognitively but not so much otherwise. And feeling a little annoyed because I didn't feel that Ellen had really read what I wrote - in my write-up of how Laurel was doing with her program, I said how important I thought spinning her was (in an office chair, that is - it really seems to help with her vestibular problems) and Ellen took it off the program. We're going to continue to do it anyway, of course.

And now we're getting nervous about Laurel starting school! A week away and we haven't even talked with her teacher yet (it's not the same one that was at the IEP meeting - she moved). Laurel's speech therapist mentioned that there's supposed to be an open house tomorrow night but we haven't even heard anything about it. We called Laurel's early intervention case worker yesterday (who's helping to coordinate the transition) but she said not to worry, the teachers only started back to work yesterday. But I love the advance notice we're getting! I did at least (while I was writing this actually, so see, it's good that I haven't gone in to work yet ) talk to Laurel's bus driver so I think that's squared away. I just feel a need for a big EEEEEEEEEK though! And yesterday was my last Monday home with her.

All righty, well, I have to get on with things and get to work. Onward and upward!

Feeling a little better about Laurel starting school...

We went to the open house (which turned out to be tonight) and her teacher seemed really nice, experienced and competent. We also met the adaptive phys ed teacher and she seemed very enthusiastic. It's going to be a small class to start off with, just Laurel and a little 2-year-old girl with Down Syndrome and twin 3-year-old "reverse mainstream" girls and a little boy whose IEP is on Monday, so they don't know much about him yet. We're really glad the class is starting off small - they're expecting it to grow as the year goes on (kids can come in as soon as they turn 2), but it should be less overwhelming for Laurel and she should get plenty of attention. Also, I have to mention that Laurel finally "performed" for Bob. I've had pretty good luck with her for a while pushing specific buttons when I asked her to on some of her toys, but I guess she doesn't do it for Bob. Well, tonight he asked her to push the "Mommy" button twice and the "Daddy" button once (we have this "Talking Little Smart First Words" toy that has buttons shaped like various things that say words when they're pushed) and she did. He was so happy he was crying! Like I said, I've seen her do it before, but what I was impressed with was that she used her left hand for the "Mommy" button (which is on the left side) and when he asked for the "Daddy" button (on the right), she dropped her left hand and picked up her right and used that. Reading that, it sounds like kind of a strange accomplishment. Trust me, it's a big deal! Anyway, we're in a pretty good mood here tonight.  

My head is just spinning right now. OK, this may have been dumb and naive of us. I'm sure a lot of day-care centers would do this to us. But honestly, it did not occur to us that Laurel's babysitter would charge us for full-time when Laurel goes to school even though she'd be watching Laurel for a few less hours (she'd be watching her for about 20 hours a week on 5 days instead of 24 hours a week on 3 days). So, that's another $360 a month! We just found out tonight when she stuck a note in Laurel's diaper bag. As it is, between her fees and what I pay for parking I only clear about $460 a month, working at 20 hours a week. It's not a lot, but it's a van payment, and I've appreciated the opportunity to keep my career viable, think about something else, and do adult stuff. But I just *can't* see working for $100 a month! And the fact is that I've hated my job lately. I'm not excited about most of the upcoming projects (how many people *are* there out there who would get excited by writing a solid waste plan?) and my boss has been awful. He doesn't understand why I can't get more done in 20 hours a week and has been making me document how I spend all of my time for the past six weeks (well, there goes another hour a week...). I asked if I could go to 30 hours a week after Laurel started school, and he said only if I could write a grant proposal to fund it. But I don't have time to write a grant proposal while I'm working 20 hours a week. I had thought I could maybe get some extra time (unpaid) in on Mondays to get that done, but now we have this dilemma! I see *no* point in working for $100/month. (Plus, frankly, I'm angry at the way the babysitter handled it and I don't *want* to give her the extra $360 a month.) Sooo...I see two choices here. 1) Quit my job. We won't be able to afford the new van (among probably other things), and since our '91 Escort is in such bad shape we'll probably shortly be a one-car family. I'll very likely go stir crazy - I am not a homebody and hated the six months I was unemployed. I'll also have to quit the gym (a perk I get through work). That would definitely suck from my standpoint, and then Bob is telling me if I do that he can't go on Atkins because he has to exercise if he goes on it and the gym is the only place he can do it. On the other hand, I've been about half ready to pack it in on this job anyway, and the other thing is I haven't been too impressed with the job Laurel's babysitter is doing lately. I think she's got too many kids - not that she's got an illegal number, but I think it's more than she can really handle. She recently took in two small babies, so now there are three babies (counting hers) and three toddler-aged kids (again, counting hers). And lately she seems cranky and frazzled and her 2 1/2 year-old is starting to act out for attention. But, it was a miracle we found anyone to take Laurel so we know she's got us over a barrel. 2) Keep working, but work out some way that someone can be home with Laurel two afternoons a week and figure out how the bus works with that since it has to go to the same place every day. Our first thought was that we'd either have to intercept it at home or just give up on it and go pick her up at school (either way, a good half hour away from our offices), but as we've been talking about it we've wondered if we could intercept it at the babysitter's. That would make things easier since then three days a week we wouldn't have to worry about it and the other two days we'd either be at home or be heading for home anyway (the babysitter is more-or-less on our ways home and about 15 minutes from our house). One downside is it won't give me much extra time to work on that proposal - and if I do get the extra 10 hours a week, we *will* have to pay the babysitter the extra $360 and there goes most of the extra money I'd make. This really bites but I guess it's the way we're leaning at this point. Although I'm still wishing I could tell both the babysitter and my boss to kiss off. And feeling guilty that Laurel is going to the babysitter's given the way things are there right now. On top of everything else, Bob and I had a big fight and I stormed out and I'm writing this from my office. I'm sure it was just because we're stressed and angry about this. I've actually talked to him since I started writing this and I'll probably get some dinner (yes, it's almost 11 PM and I haven't had any yet) and head home soon. Man, how to throw a monkey wrench into an evening...and here I thought we were going to spend it watching "Chicago" on DVD...

We have worked something out with the babysitter...I've talked to her twice today. I'm really not too proud of myself because I wound up yelling at her the first time. I apologized when she called back later. What we worked out was that, until I can get 30 hours/week, we will pay her $25 extra a week instead of $90. I'm still not completely happy, but I know that she's right that we wouldn't get a better deal elsewhere (if there *were* an elsewhere). And although this will make things a bit tighter, I think we can do it and it gives me a much better chance of *getting* to 30 hours/week. In the long run, I do think I need to work somewhere else. I don't really want to work at home - part of what I like about working is that it gets me out of the house and talking to other adults (I do actually like most of the people I work with). Yesterday afternoon, actually, I found out about a new agency that might be created for our watershed that would have a reasonably steady funding stream and would be hiring. I would LOVE to work there and I think I'd be a top candidate. But, it probably won't be a reality for at least a year. It would be an argument for sticking it out where I am though and trying even harder to impress my boss (although I already feel like I'm busting my butt) so that I could get a good recommendation. Anyway, I came home feeling all excited about this job possibility which just made the babysitter price hike news that much bigger of a slap in the face. But hopefully it will all work out in the end...

We had an appt with the surgeon today...Laurel will be having her "button" replaced tomorrow. The Keflex didn't really help the leaking so we are moving on to the next step, which is to try replacing the button with one with a slightly larger diameter and a bigger "mushroom" (wider part on the inside that holds it in). They are going to put her under anesthesia because the doc is worried that going up to the larger size will be more painful than usual, so we have to go through the whole handing-our-baby-off thing. It's impossible not to be nervous about it although it really shouldn't be that big a deal. But of course, the last one wasn't supposed to be either and she wound up back in the hospital in a couple of days. First day of school and then surgery, the poor kid is going to be wiped by the end of the day! We could have had the surgery earlier in the day and put off school for another day, but we've already got everything set up that the PT will be waiting for Laurel to make sure that she gets a seat that's comfortable for her and the ST will be waiting for her so that there'll be a familiar face there for her (since it's the same ST that she's had for over a year now). I hope it will all work out OK! Please send lots of successful surgery vibes for Laurel and calming vibes for everyone!

We just put our baby on a school bus for the first time...my mouth went dry walking up the driveway. And Bob and I both cried walking away. There's a nice old lady sitting next to her on the bus. But she has never in her life ridden in a vehicle without us. She seemed calm enough though - I think we were more strung out about it than she was. We got pictures though.

I think we'll be nervous wrecks all day.

I think today was a success....tiring and aggravating (we spent almost 4 hours at the hospital for a 5-minute procedure), but everything seems to have gone well! Laurel's button looks MUCH better than it did after the last operation - it's nice and flush against her skin and so far (one feeding) we haven't seen a trace of leakage. And she seems in a much more normal mood tonight, not screaming like she was after the last one. The only downside is that it turns out that the new button doesn't take the same size tubes, so now we have to wrangle with the supply company to get different ones (it came with one but we like to have several). But we're feeling cautiously optimistic about the results of the procedure.

It sounds like school went all right as well. She had several fussy periods (that would actually be pretty normal for her) but calmed down quickly, and took a couple of 20-minute power naps. But she was quiet and attentive during story time, and also enjoyed playing with a computer with an adapted keyboard. It seems like a good start! We've been trying to explain to her, though, that every morning at school is not going to be followed by a trip to the hospital.

Thanks for all your support!

Cable modems are great, except when they don't work. Which ours stopped doing yesterday afternoon. Apparently it's some problem with their equipment and they don't know when they'll get it fixed. If I have to go the whole holiday weekend without the Internet, I may go through withdrawal.

Meanwhile, we did have plans to go to the County Fair this weekend. They're scheduled to have a demonstration of therapeutic riding tomorrow. But there may not be a fair to go to! Last night a storm came through and blew over the Arts and Crafts tent (at least I picked a good year to not enter anything), trapping about 100 people! It doesn't sound as though anyone was seriously injured. But to think, we almost went last night! There was a llama show where the handlers were kids with special needs (even including kids in wheelchairs) that we really thought about going to, but we decided once was enough and we'd rather go Saturday. The fair's closed today and they don't know yet if they'll reopen.

Oh, and we (gulp) put a deposit on a Toyota Sienna this afternoon.  

That's the news from our neck of the woods - in case I don't get to check in again for awhile you'll know why!