Updates on Laurel: July 2004

Finally, our trip to MN/WI (you'd think I was being paid by the word)...

Overall, it was a good trip - but it definitely had its ups and downs. The first big down was just getting there! The first leg was from Baltimore to Detroit. First Detroit was closed due to weather. Then it was Baltimore (the worst storm I've ever been through in a plane passed over us - I was glad we were sitting on the ground!). Then Detroit again. We sat there for three hours before we finally got to take off. And poor Laurel spent a lot of that in her car seat because we kept being told it'd be any minute. All things considered (and especially considering that she was teething! Yes, that last, elusive incisor finally popped through that very day. Talk about good news/bad news), she was a real champ. But once we got to Detroit, first the plane they got us on was held up because *it* was coming from Baltimore, and then they held it up some more while they waited for a big group of kids to connect with it, because otherwise they'd have been stranded in Detroit for the night. Laurel had been so good until that second plane, but she just had a fit when she realized she was getting on another one! And another fit when we *finally* got to Milwaukee and got our rental car and stuck her in her car seat *again*. That got us at least 15 minutes of the "Help, these crazy people are torturing me" cry...

Anyway, we stopped at Madison at about 11:30 that night (Thursday). Bob dropped Laurel and me off to meet one of the Nov. 2000 board members in the morning (we were supposed to meet at 7 PM Thursday night but that SO didn't happen, obviously) while he made a run to Wal-Mart, so we didn't get long to visit but got to meet Jane and her gorgeous baby Elaina and Elaina's almost-as-gorgeous room. Then on to the Twin Cities for Bob's HS reunion.

The reunion went well - there were several people Bob knew from the orchestra (and his ex-girlfriend!) and he had a really good time playing with them in the alumni orchestra. And we had fun playing dress-up at the dance.

Then back across Wisconsin on Sunday for the camp. The first evening was actually GREAT because Laurel laughed two different times! First while one of the other mothers was tickling her kid and he was laughing (I was holding her and she kept looking at me while she was laughing like "Mom, isn't this the funniest thing ever?" It was so, so cool). And then again later around the campfire while the group was making a funny sound effect as part of a song, she just seemed to think that was hysterical too. Doing it for her later, we could only get her to smile, though, so apparently it's just not as funny without a large group.

Monday was the start of a pair of pretty bad days, though. The first thing Laurel had was an evaluation but she just was in a horrible mood. Mostly we wound up walking around with her trying to pacify her while talking to the therapist. Then there was the therapeutic horseback riding. Laurel cried at first, but then she kept having alternating periods where she'd cry, then calm down. Bob started off being one of her sidewalkers, then switched with me. Twice while I was walking with her, her crying got to the point where we stopped and I asked her if she wanted to stop. She wouldn't look at me when I asked that, so I asked if she wanted to keep going. She looked straight at me. The second time she looked at me but she was still crying. And I said, "If you're crying, I'm still going to think that means it's time to stop." And she stopped crying, instantly. I was really proud of her for not quitting. But after it was all over, and we asked her if she wanted to go back, she seemed ambivalent - not really looking totally at us or away. Tuesday morning it went badly though, and we switched her to her tummy and that threw her into hysterics, so that was the end of Laurel's career as a horsegirl, at least for now. We think a lot of the problem was that she was getting worked up and stiff and then it was hurting her to have her legs spread apart. If she had lots of opportunities, I think she might learn to relax and she might enjoy it more. I do think it would be good for her strength and balance if she could. As far as I know, there's still no facility around here anyway, though.

Anyway, back to Monday. That afternoon she was supposed to have two therapy sessions back to back. The first one went really well - she seemed to take to the therapist and was rolling all over the place for her. And the therapist showed us this massage technique for her feet called "bone rolling" which she said would help with Laurel's foot sensitivity and which Laurel really seemed to like. But by the end of that one she was tired, and the second therapist really got in her face and I think that was just totally the wrong approach to take with her at that point. He had the idea of breaking things up with some swinging side to side, but Laurel often doesn't like that and this turned out to be no exception. So that was the end of therapy for Monday. One upshot of that was that we got most of her other therapy sessions moved apart so that she'd have a break in between. Oh, and later we tried her on one of the trikes that had been donated. They were supposed to be adapted trikes, but they weren't adapted enough for her, and she had another fit. So, I'd hoped we'd get a trike out of the trip, but that was a no-go.

Tuesday, like I said, in the morning we had an unsuccessful horseback session. Then she was supposed to have another session with the therapist she'd liked, but she was acting miserably constipated (she'd hardly gone since the beginning of the trip) so we ended up hauling her back to the room to deal with that. Tuesday afternoon she had her Theratog fitting. Theratogs are these sort of elastic wrappings that are used to help correct problems with posture. For instance, Laurel's were fit to (among other things) help keep her from leaning to the right, help her hold her legs the right way, and help her sit straighter. The fitting was done by the person who developed them, who really knows her stuff. We learned a lot from her, including why Laurel's AFOs (ankle-foot orthotics, i.e. braces) don't really work for her. Turns out that the bend in them is more than she can really handle (unfortunately, the therapist thought Laurel would have to have serial casting in order to really be able to hold her foot flat) AND her feet are really different from each other, so having AFOs that are mirror images of each other is just wrong. She recommended we see a different orthotist (the person who fits the AFOs), several hours away but it will be worth it if they actually work and don't make her scream this time. She also gave us some questions to ask the orthopedist when we see him next Friday. But, while we learned so much, the session was just awful for Laurel, with all the measuring and moving and flipping and fussing. She was just pretty much melting down by the end of the session, and so were we. Bob had been being really negative about the camp for the whole two days, saying we shouldn't have come and we were wasting our time and money, and after his latest about how the Theratogs were a terrible mistake too I just completely lost it on him and we had a big fat fight. Meanwhile, this was the night the parents were supposed to go out together as a group! (A mass of volunteer babysitters had shown up for the occasion.) And Laurel was still in a horrible mood. Well, Laurel settled after we got the Theratogs off (the upshot is, I think we will have to take it slow with the Theratogs - I think it's a lot of work for her to wear them) and we ultimately managed to get things patched up and go out and have a nice dinner in Lake Geneva.

On Wednesday, things started to look up. She was still kind of fussy in the morning, but we got some good suggestions out of the morning sessions, and she had a FABULOUS time in the pool in the afternoon! She was put in a baby float, and she very quickly learned to launch herself from the side of the pool with her feet. But just in case we were getting too cocky, she started coming down with a cold. Despite that, the next day, Thursday, all of the sessions were good, including this amazing pool session where the therapist was floating on her back, had Laurel facing forward with her arms over a foam roll, and Laurel was kicking and propelling the therapist across the pool! Laurel also had a great time in one of the "land" sessions knocking away balls that were being dumped around her (the kind of balls you find in a ballpit). We were really impressed with how much more she was moving and using her arms! BTW, I gave her Zicam (the kind with the swabs) as well as the usual cold stuff and I think that it really might have helped keep the cold from being as severe.

Friday was kind of a wrap-up day, and we ended it with a cruise on Geneva Lake, which Laurel just loved. And I think in the past it would have been a bit too cold and windy for her, so I think she's making progress that way. Saturday morning the group went to Yerkes Observatory for a tour, but Laurel was back in a crummy mood so Bob went without us. Then BRIGHT's president fed us burgers at his house before we were off on another thrilling travel day. This one at least went smoothly enough. We didn't get to Baltimore till after 10 PM, though, so we stayed the night at a hotel. Sunday we took a tram tour of a wildlife refuge (Bob and I enjoyed it, Laurel slept through it) and headed for home.

So...overall, I think it was a success. I guess we'll know more when we see what the long-term effects are. We didn't get as many concrete activities to do with her as I'd hoped, but we got a few ideas. We've bought a foam mat (since she seemed comfier on those than she is on our carpet) and some balls, but wouldn't you know, so far she hasn't been enjoying them at all! We also bought a baby float (we're going to see about a foam roll, too), and we're planning to take her to the therapy pool a lot more often. We learned some great stuff from the Theratogs person, and hopefully the Theratogs will help her with her posture. And we REALLY enjoyed getting to meet the other families, they were terrific! I took a bunch of pictures, I hope I'll be able to get them scanned in soon...

White chunk macadamia nut cookies to all who made it through this novel.

We had a pretty relaxing weekend with a jolt at the end...

Saturday we drove up to Northern VA, because I bought Bob tickets to see Jimmy Buffett for Father's Day (I had to buy them on Ebay, didn't make the 5-minute window to buy them from Ticketmaster ). Jen H. was going to watch Laurel and I was worried, because she'd been in a lousy mood, but I guess she had a poop and a nap and when they took her to see the fireworks at a local mall, she had a great time. Meanwhile, I was in the throes of AF day 1, but a margarita and some wine helped the cramps and my annoyance at the drunks. Ultimately a good time was had by all. (Except, I guess, Daniel, who did NOT like the fireworks.) We stayed in a hotel because it was late, and we were going to see more fireworks with Jen H. and family the next day.

Sunday was first and foremost devoted to sleeping. It was our first real chance in a couple of weeks! Everybody slept in, Bob fed Laurel, I gave her a bath and took a shower, and we got down for breakfast shortly before noon. Then we went back to the room, I fed Laurel and we all took a nap! We didn't pry our butts out of that room until after 3. We did a little shopping and headed over to Jen's. Laurel was in a lousy mood again (constipation? teething? we're not really sure) but ended up being OK to go out to dinner and see the DC fireworks (score one for "the optimist" - Bob said if it were up to him, he wouldn't have done either). We saw the fireworks from the top of the parking deck where Jen works, which has a great view of the Mall except for the construction cranes! (I have a feeling that next year, it won't have a great view of the Mall...) But the fireworks were still really pretty - it's been several years since we made it to a big-city display.

Sunday we did some more shopping (we're trying to find an inexpensive table in a dark cherry color for our family room - unfortunately, inexpensive and dark cherry don't seem to go together...) and headed for home. But when we got home, there were two messages on the answering machine - one from my mother saying, "I think I might have a problem," and one from my sister saying to call her before calling Mom. So...I've talked to both of them, and the upshot is, someone broke my mother's car window (but didn't steal anything? Actually, Mom says the car was open) and stole her security lights. She's pretty freaked by this (heck, I would be too) and ready to move. And apparently, more willing to move to Southern California than Virginia. That surprises me - she always said she was NEVER going back to California - but I guess she feels our weather is even worse. So my sister is looking into Leisure World/Laguna Woods, which is a gated senior community just a few blocks from where she lives.

Boy do I have mixed feelings. I do think the best thing for Mom is to get out of there and get into someplace where maybe she can make some friends. She had always been so adamant about not going back to CA, though, that I guess I had envisioned her coming here. Of course, if she moves to CA we won't see her as much. And if she moves *anywhere*, there is just a terrifying amount of work to be done in terms of sorting through the unimaginable clutter (I can't even begin to describe how much stuff there is - not only hers but a lot of the stuff from my grandma which has been sitting in the garage for 29 years) and trying to get the house in any sort of shape to sell (not even sure that's possible, at least as long as she remains unwilling to have workers come into the house). Of course, not to be morbid but all of that was going to have to be done sooner or later anyway. But boy, I know what I'll be doing with my annual leave for the rest of the year. And of course, this would change the way we do Christmas, Thanksgiving and numerous other holidays. I can't help but feel sad. It would really be the end of an era in our lives - the only thing left in Pittsburgh would be my dad's grave. But I *know* it would be better for her than being where she is. I am such a bundle of conflicted emotions today...

We don't know where our babysitter is! She should have been here an hour and a half ago. Bob tried calling both her home and cell phones with no answer. We gave her yesterday off, but can't think of any reason she should have thought she had today off too.

I had an acupuncture appt this morning and then decided to take a mental health day because I was still feeling pretty unsettled about the whole Mom moving thing, so I came home and found Bob and no babysitter and yet another reason to worry. I hope she just got mixed up but I can't think why she should have...

We found out what happened...her fiance's appendix broke on Sunday and she's been at the hospital. She thought she'd left a message on our answering machine and was surprised when she got our messages when she finally came home to get some rest tonight. Sounds like her fiance is stabilizing, his mom is going to come down and she *thinks* she'll be here tomorrow, but of course Bob (who answered the phone) told her we'd deal with it if she couldn't.

Anyway, relieved to know what happened and that it sounds like everything will be OK!

I just spoke with the nurse at Laurel's neurologist's office. It turns out that that EEG stopped recording at *7:20 PM*. (We have no idea what that correlated with, we can't remember anything in particular happening at 7:20 PM). So it ended long before *we* thought it had stopped (when the box was dropped in the middle of the night) and the EEG did not get any of the head jerks at all. What it *did* get was what the nurse described as "frequent multifocal spikes" originating from the left posterior which could cause seizures. As a result, she does not recommend taking Laurel off her seizure medication.

I just got off the phone with Bob and we're both feeling discouraged. We're very disappointed to hear about the spikes and worried that they are impeding her progress. But I hate to up her meds to try to get rid of them and risk her being further drugged out - seizure meds can impede progress, too. And to top it all off, we still have no idea about the head jerks. I am hoping but still not sure that they are correlated with her teething (hoping because she is so close to through with teething). The nurse said that we could try again for the in-patient EEG if we wanted to. Of course, there is still a chance insurance will deny it again in favor of simply upping her meds. We're mostly thinking we will wait and see until our next appt with the neuro, which is in August. She doesn't seem to be getting any worse, anyway...

Laurel had her annual check-up at the Children's Rehab Center this morning. We have a big decision to make now, but we saw that coming so overall I would say the appts (with the orthopedist and the developmental pediatrician) went very well. The big decision is about what to do about Laurel's tight ankles. She just can't hold her feet flat when her legs are straight. The options are serial casting, Botox, or both, followed by much more rigorous use of ankle-foot orthotics than we've been doing. Serial casting is pretty much what it sounds like, she would get casts to force her ankle to bend and the tendons to lengthen. It's "serial" because they often have to do a couple of successive casts to increase the bend. Obviously, that sounds miserable. The doctor is in favor of using Botox (at first he was talking about doing it alone, but toward the end I think he was thinking we might have to do the casting in addition). We have heard bad things about Botox, particularly in repeated use (the effects of Botox don't last) but I've heard some things against using it at all. So we have our research cut out for us. Thanks to BRIGHT and the fact that our babysitter's best friend happens to be the mom of a CP kid who had serial casting done (by a doctor in DC that we're considering going to for a second opinion), at least I know how to get started - not that I'm exactly psyched about it.

Anyway, we were expecting that discussion (we knew from conversations with Laurel's therapists that it was coming) and it actually went better than we were expecting in terms of the doctor being willing to listen to us and not totally force "his way" down our throats. And then, because a couple of therapists have noticed that one of Laurel's legs is longer than the other and have worried that it might be a problem with one leg coming out of joint, she had a hip x-ray. The results of that were GREAT news - not only is there no problem with the joint, but her hips were better developed than the orthopedist expected, with cupping at the joints. That is something that forms with motion such as crawling and is very important to being able to walk. Since she doesn't crawl, all I can think is that it must be all the kicking she does! Anyway, we were practically doing a happy dance over that one. I am not yet giving up hope that someday this kid will walk...

We sailed through the appt with the developmental pediatrician. We *finally* got a really good height measurement, and she's 40" tall, which puts her right back on the 75th percentile where she was born (I suspect she never really left it). She's 29.3 lbs, so at the 25th percentile for weight, again right where she was born. BTW, it's really unusual for a kid with CP to stick to their curves so well. The doc was very complimentary of how healthy she looked and how active she was (she'd been miserable earlier [the x-ray showed lots of gas in her intestines - no surprise there!] but was kicking mightily during the second appt). We've been talking about keeping track of her oral feeding calories for a week and cutting down her tube feedings accordingly, and he was really supportive of that idea. We talked about the Botox vs. serial casting issue (he said either would be a reasonable choice) and the EEG. When we told him one of the reasons we were given for being turned down for the inpatient EEG was that we hadn't tried medication changes, he was floored. "Seriously?" he said - as if we could make something like that up! But he didn't have any insight into what the EEG pattern that was seen means, so mostly we are going to have to wait for the neuro appt. I got pretty down last night because someone on the infantile spasms group said that their kid had that pattern and they were told it was a transitional pattern from IS to Lennox-Gastaut Syndrome. From research Bob did and another response I got today, though, it's not sounding so much like it necessarily leads to something else. Guess I just gotta try not to worry about it till the neuro appt...

I *was* actually in a great mood for a while after I got home last night. I was in a funk and left a little early, but I got home and Laurel smiled at me and Danielle told me lots of good stuff. Like that Laurel loved the rotisserie chicken I pureed for her, and she had a great time playing with the balls on the floor (that we bought as a result of the therapy camp and she hasn't wanted a thing to do with since), and best of all that Laurel taught Danielle a game I taught her! When I was filling out the surveys for the therapy camp, one of the questions had been whether she could squeeze and release a cylindrical object. I wasn't sure and so one night when I was very bored doing the light therapy that was part of the whole Sensory Learning thing (BTW, we're not sure how much we got out of all that...maybe that her feet are less sensitive, her eyes are working together a bit better, and she doesn't overwhelm quite as easily...it's all kind of subtle, though) I taught her about squeezing and releasing. She thought it was a great game and we've played it a couple of times since. Anyway, Laurel reached out for Danielle's hand and squeezed and released. Danielle said, "What was that? Do it again!" and before long she was playing the squeezing game too. This is so cool because Laurel doesn't tend to initiate play. I also like that she decided to see if she could do it with someone other than me.

Anyway, overall I'm feeling better today than yesterday. It's a relief to have that orthopedist appt over with!

*BLAGH* Wish I were feeling more positive about summer school for Laurel. 

Today was her first day of summer school (it's 4 days a week for 4 weeks). Unlike what we originally thought, it's not her speech therapist teaching it but another person, so it's ALL different - different teacher, different kids, different school. I decided to stop by and see how things were going. When I got there, Laurel was sitting in a bean bag chair while an aide was pushing buttons on a couple of toys for her (which were placed somewhere that she couldn't have reached them if she wanted to). I guess it was better than her just being ignored, but it didn't exactly seem very stimulating for her. After a while she started to whine, I think she was getting bored, and since the aide didn't seem to be inclined to do anything but keep pushing buttons I picked her up. After a bit her OT showed up (happy surprise, it was her usual OT so at least there'll be one person working with her that knows her). She played with her for a bit and then it was time for Laurel's tube-feeding. Well, before I even realized what had happened, the teacher had just basically dumped in the 4 oz of formula we'd sent. Just opened the clamp on the tube (which hadn't been primed with formula so she got a tubeful of air, too) and poured. By then it was kind of late, but I said, "We usually feed her a lot slower than that, like an ounce every five minutes." After which ensued the following conversation:
Her: "This is how the other kids I've fed get tube-fed."
Me: "Well, given her history of reflux we've tended to go on the conservative side in terms of feeding rates."
Her: "Well, there weren't any instructions."
Me: "They were in the book I sent."
Her: "Oh, I didn't open that."
Argh. Anyway, Laurel was pretty much hysterical, and I ended up staying the rest of the morning (another 45 minutes or so, which hadn't been in my plan - I wound up being good and late to work) trying to get her to calm down. FINALLY she relaxed enough to let out a couple of enormous burps, and by just about time to go for the bus she was OK. UGH.

Well, I don't think the teacher will do that again, but I wish I'd been more impressed - neither the teacher nor the aides seemed like the sharpest tacks in the box. (At least there's two aides, so that's something, although there are more severe kids in this class than there are in Laurel's regular class too - there's actually another BI kid who seems more severe than Laurel.) I know Laurel's therapists really wanted her to go to summer school, but I have to wonder if being home with Danielle wouldn't be a more constructive experience for her. But like I told Bob, I suppose we should give it a few days...   I worry that I'm judging too quickly since it was just the first day and sorting out 8 different special-needs kids has got to be pretty chaotic. In comparison, when Laurel's class started last year there were only 2 special-needs kids and 2 "normal" kids, plus we'd had a lot more chance to talk to the teacher before and have her meet Laurel. I'm feeling really conflicted, because I want to be fair to the teacher, but of course I don't want Laurel in a bad situation either. And then, there are the reasons she's supposed to be going to summer school, to get ST and OT and to not get too unused to being in a crowd situation. The OT is only *supposed* to work with Laurel for 30 mins/week, but she told me today that she is going to be there three days a week and only has two classrooms to cover, so she expects she will be able to spend more time with Laurel than that. I really want to talk to the ST and find out what her plans are, too. The OT also told me that although Laurel wasn't recommended for PT (basically, her PT doesn't think her gross motor skills could regress any further - that's the criterion for which the kids get sent to summer school, whether they would regress more than 9 weeks' worth if they didn't go), the PT who's working the summer school is a good friend of hers and she'll get some work in with Laurel too, under the table. (Is this striking you as absurd, that the PT should have to work under the table with Laurel? It is me... )

Hopefully we'll have a better picture of the pros vs. the cons in the next couple of days and can make a good decision. I really hope. This and the ankle thing and the head jerks (which have been kind of bad again lately)...I just feel like my head is swimming.

Argh - we can't seem to take this kid swimming! This is the third weekend since we got home from the camp now that we've tried to take Laurel swimming. She did so well with it at the camp, we've just been dying to go! The last two weekends, it seemed like she'd start the day in a good mood but by the time it was time to get ready to leave she was in an awful state (I think there was some gas and constipation going on - that seems to be the downside of her eating more solid food). Last weekend we even got as far as getting her into her bathing suit. Well, today, we finally had her in a great mood, got ourselves to the gym and changed into our bathing suits, only to walk out to the pool and find out that it had just been closed because they'd heard thunder! They told us we could wait and see if it reopened (15 min. per thunder incident, they said), and we did and they finally did. Bob and Laurel got into the pool and I stopped to blow up the float we'd bought for her (like the one they'd used at camp) and no sooner did I get into the pool than there was a big loud crash of thunder that we could ALL hear, so that was that. I guess we'll try again tomorrow...

It looks like our babysitter has flaked out on us! She was late getting in today and the bus took Laurel back to the school. The school called on the cell phone and Bob went to get her, meanwhile she called me and I told her that he was on his way to pick Laurel up. She explained that she'd gotten stuck behind a guy going 5 miles an hour (the back way to our house is a 2-lane road) and flipping her off. She asked me if Bob was mad and I told her I wasn't sure. She sounded nervous and I probably wasn't as reassuring as I could have been that he wouldn't be mad (I really didn't know), but I never dreamed she'd flip out and disappear! When Bob got home with Laurel he found the formula out and warming but no Danielle! That was a couple of hours ago and no sign of her, and no answer on her cell phone. I left a message, but I'm worried.

Meanwhile I've put in two calls and sent a note asking Laurel's teacher to call me. Laurel only got three bites of oatmeal orally all week at school and came home completely soaked with formula on Thursday. Wednesday night, I talked to her speech therapist, who suggested I should first try to talk to the teacher about my concerns, and if I wasn't satisfied I should talk to the summer school superintendent, and if I still wasn't satisfied I should feel free to pull her out of school. If I haven't heard from the teacher by tomorrow morning, the superintendent is definitely getting a call. But of course, if the babysitter doesn't show back up, pulling her out of school will mean even more time missed from work! Ugh.

FWIW, at least we did manage to go swimming yesterday! Although by the time we got in the pool Laurel was really sleepy and didn't want to do anything but just kind of hang out in the float. But at least she seemed to be enjoying herself. 

Anyway, I was in a pretty decent mood this morning but it's definitely gone downhill! I hope we don't have to look for yet another babysitter...

I had a long conversation with Laurel's teacher last night - still no word from the babysitter, though! 

Her teacher called about quarter to six last night and said she would have called over the weekend but she'd been out of town. After talking to her, I think she's making an honest effort. She said that two of the four days last week, Laurel's therapists showed up at snack time so that's why Laurel didn't have an oral feeding. And she thinks Laurel is being slow to warm to the idea of being fed by a stranger. It does seem to be going better - she ate more yesterday and almost the whole snack today. The teacher also said that Laurel is doing well with the therapists and that yesterday she seemed enthusiastic at circle time and was really paying attention to the book that was read. Today's report from school looked good too. I'm still not totally happy that the school didn't stick to Plan A, having her teacher be her speech therapist, because I think having a familiar teacher could have saved a bunch of adjustment time (important when the session is only four weeks!). But it seems like they are settling in with each other so it's not worth rocking the boat for this session (next year, though, if this comes up again I'm going to ask the ST to CALL ME as soon as she gets any wind of it and I will call the supervisor and raise bloody hell). Also, the teacher said the reason Laurel came home soaked on Thursday was because Laurel had fallen asleep during the tube-feeding and they hadn't wanted to bother her so didn't realize that the tube had come out until time to get her up for the bus, and there was no time to change her clothes. She said they'd told the bus driver to tell us that, but I guess it got lost in the shuffle. OK, fair enough.

Meanwhile, we still don't have a clue what's up with our babysitter! We're wondering if she was worried Bob was going to do something to her because he was angry that she was late and she freaked out? (Her ex, at least, is a piece of work and I don't know how much other experience she's had with guys like that.) I've left two messages on her home answering machine and one on her cell phone, and Bob's left one on her home machine, trying to reassure her that nobody's angry and we just want her to COME BACK. She's been terrific with Laurel - she especially does an *awesome* job with getting Laurel to eat orally and she does a lot of Laurel's program, too. I just feel sick at the idea of having to get another sitter! But I don't feel like there's anything more we can do - I even tried calling her best friend (who I just talked to night before last, actually, she has a kid with CP too who recently had serial casting so I was asking her about that) and left a message saying, give us a quick call and let us know if you've heard from Danielle! One corner of my mind is worried that it's something scarier than her just freaking out. Honestly, I checked the local TV station's website to see if there were any stories about missing women...

Anyway, I have a real sinking feeling about this. WHY IS IT ALWAYS SOMETHING?!? Couldn't things just calm down and hum along smoothly for a while?

Not a clue what happened to Danielle! I even tried calling her best friend again tonight and left a message that we just wanted to know that Danielle was OK because we were imagining some pretty awful things. But she hasn't called. We don't know what to think! Meanwhile I also put a call in to Laurel's old sitter (the one that moved to the next county) to see if she has any room to sit Laurel temporarily. But she hasn't called back either, so I'm really batting a thousand here!

Well, we did hear back from Laurel's old babysitter this morning, and she has space for her. So I have to leave work in a few minutes to schlep Laurel out there. It's going to be a real PITA while summer school is in session. Still, I'm grateful that she's willing to take her on such short notice - it's less of a PITA than trying to juggle taking care of her by ourselves with work. We're figuring at this point that there's nothing for it but to advertise the position again in this Sunday's paper. But our experience is that it takes two weeks to get through all the phone calls and interviews and pick someone, and then if they have to give notice somewhere that'll be another two weeks.

I just wish someone would call and let us know Danielle's OK! I figure the police aren't likely to take us seriously, though - at least that's been the take from local people I've talked to about it...

Oh, goody, I have a rare, untreatable skin condition!

Let me say off the top that it's neither life-threatening or permanent, although it IS very itchy and it apparently can cause permanent discoloration. Anyway, I went to see the doctor about this horrible rash I've had in and around my armpits and on my upper legs and lower belly for the last couple of weeks. He had to dig for a while but finally decided that it looked like something called inverse pityriasis rosea. There's no treatment for it except topical stuff to try to help with the itch (and I already tried hydrocortisone cream with no success), but it will probably go away on its own within 6-8 weeks (some web pages I found about it said sometimes it can take 3-6 months...I could lose my mind before then). They don't know what causes it but they think it's a virus. At least, once it goes away, it doesn't come back. It was on the web that I also read about the permanent discoloration.

It could definitely be worse, but still, I'm so freakin' thrilled...

Well, the babysitter search is turning out to be a real bust this time. We've had exactly one person show up for an interview (one canceled, and two just blew us off). We've only gotten 10-12 calls this time. We had one last hope, someone who was supposed to come this morning and had sounded really interested and great over the phone, but she never showed up. So I just re-ran the ad. When I ran it last Sunday, I had added a line about "special needs experience a plus" since our top candidates have always ended up being the folks who had some and the last two times we got so many calls, I thought it might be nice to cut down on them a bit. But I don't think it helped with the overall quality of the applicants and maybe it scared some people off, so this time I'm running it without that line.

In the meantime, the babysitter we've been taking Laurel to is going on vacation next week. I called Laurel's old preschool teacher because I knew she knew lots of people and could probably find someone to help temporarily (or might even be willing to do it herself) and she wound up arranging for one of the aides in Laurel's summer school class to come out for the week. One of us will have to stay home Monday to give her a key and show her around. I was SO hoping that we might actually be training someone permanently by then!

Meanwhile, we were looking forward to a nice weekend in West VA (Bob's company picnic is there tomorrow) and it's supposed to rain on Sunday! I was going to make a reservation for us to take a scenic train ride but I think it would be a waste of money. Bob and I are both in kind of a funk today...