Updates on Laurel: January 2005

 
More or less as posted on the November '00 Playgroup on eboards4all or the "Over 35 and Hitting Our Stride" board on Network54
 
January 3, 2005

I'm back...

Man, was that a Jekyll-and-Hyde trip. The part in Minnesota went pretty well this year, but the part in Pittsburgh was solidly awful. First off, when we got to my mom's house Monday night (the 20th), the smell of cat urine just whacked us in the face. Turns out my mom has acquired another cat and isn't cleaning up after this one any better than the other one. Even though I take Rhinocort and allergy shots, I could feel my throat closing up from the cat dander, dust, etc. in the house. We gave Laurel some Benadryl before we put her to bed, but even then, shortly after she was laid down she could scarcely breathe. We got her upright and breathing again, but then she started to seize. It went on and on. I wasn't keeping track of the time but I'm sure it was at least 20 minutes - by far the worst we've seen since she was a baby. She spent the night crammed in with us in a full bed and we told Mom we were seriously considering staying in a hotel when we came back.

Our flight to Minnesota wasn't the greatest - two hours late and a piece of luggage that we didn't get till the next morning - but at least we HAD luggage, which was more than my BIL and family had - they had flown USAirways from Philadelphia. (They arrived Friday night and finally got the last of their luggage Tuesday night.) Laurel was feeling better than she had in ages and was in the best mood that she's been in in just months. Except when we went to see my cousin, who has two cats, and she got all snorky again. We're convinced now that she has a cat allergy and that's part of the reason she hasn't been feeling good. We're not prepared to get rid of our 11-year-old cat, but I've bought stuff to treat the carpeting, upholstery, and cat, and we figure we'll buy a new vacuum cleaner and an air cleaner or two. Hopefully all that will help...anyway, because she was calmer, her tone was so much better and for the first time in months she was willing to stop tipping her head backwards. We had some problems with her getting overwhelmed by the three 7-year-old boys running around (heck, we were sometimes overwhelmed by them) but mostly she was great. I think the highlight for her again was going to the aquarium at the Mall of America. We didn't do the overnight thing like we did the last couple of years - she is just getting too big for Bob's mom to wrangle for that long. We did have her watch Laurel for a couple of hours though while we ran up to the Mall and rode some rides and did a little shopping.

But then we got back to Pittsburgh Tuesday (the 28th)...things started out great, the flight back couldn't have gone better. Although when we got to the hotel and I called Mom, she sounded very surprised that we were at a hotel, even though I had called after the visit to my cousin and said we were absolutely staying in a hotel. She is definitely having some memory issues. After dinner, I got to work clearing off the floor and vacuuming (thankfully it was a nice new HEPA-filter vacuum that my sister bought when she was there in September, although hadn't gotten a chance to use) - filled the vacuum cleaner bag on two small rooms. It really improved the breathability, though.

The next day, though, Bob discovered that sewage was backing up into Mom's laundry room. He spent some time poking around in there, then I dragged Mom off to the doctor kicking and screaming (her blood pressure check when Marie took her at Thanksgiving had been 160-something and the doctor's office had been bugging her for a revisit) before I tackled the cat excrement in the finished part of the basement. That had to be one of the worst cleaning jobs I've ever done. I must have picked up 100 pieces of cat doo not to mention the lake of urine. The smell when I dumped the cat box that the cats had long since given up on made me have to step back a couple of times to catch my breath...but when I was done, the room was de-stunk and safe to walk through again.

The next day, Laurel woke up with a cold and Bob woke up with diarrhea. We had an even harder time convincing Mom to go back for the blood work that the doctor had wanted (couldn't get it on Wednesday because the doc wanted cholesterol so she had to fast) but Bob finally goaded her into it. By the time we got back, though, he was throwing up.

Friday was a couple more hours spent in a waiting room, this time at the hospital to get Mom's TB test read (she'd gotten one on Wednesday, but the doc's office was closed on Friday when it needed to be read). By the evening Bob was starting to do better and was going to try to go to the New Year's Eve dinner at our hotel (we had gotten this package deal that was really expensive for New Year's Eve but so cheap for the other nights that it more than made up for it, and it included dinner and drinks) and Laurel threw up. And again. And again. We ended up with dinner from Sheetz and a sense of gratitude to Target that they were open late on New Year's Eve, so that we could get some Pedialyte. I did have a couple of the free drinks when we got back to the hotel (just took them back to the room).

Saturday we got over to Mom's house and found her lying in bed and the bathroom strewn with underwear - yup, she'd gotten the bug. So I went out shopping for her (we'd been supposed to go together) and after Bob and I had dinner, I cleaned the other cat litter area. The papers under the box were from 2002. Then Mom called me in and showed me that she'd been throwing up dried blood. We wanted to take her to the ER, but she wouldn't go. (We actually strongly suspect that she has acid reflux and has had it for a while, but she won't admit she has a problem even though she spends several hours spitting up every time she tries to eat a meal of any size.)

Yesterday she was doing better, so I gave her the presents we'd bought for her (we had some we were going to open there too, but wound up just bringing them back with us), went to the store for her one last time, and then Bob spent several thrilling hours (this time wearing rubber gloves) throwing out all the sewage-soaked stuff in the basement. Finally on our way, and home around midnight...BOY was I glad to be home!!! I can't tell you how much I wish Mom would move. But we have tried, and tried, and tried to convince her. (We especially leaned on her hard after the blood-vomiting incident.) And once again, I just have to try and shrug and say, well, I did all I could while I was there. We told her we weren't coming back until Memorial Day...part of me feels guilty, part of me says we need to not go back for awhile for our own good. Bob says he really doesn't want to take Laurel there at all any more. I have mixed feelings. UGH...

Anyway, home again, where not having a babysitter seems like a manageable problem in comparison. Here's hoping that the rottenness of New Year's doesn't bear any reflection on the new year! And that nobody has a worse holiday story.

 

January 16, 2005

Update...

First off, we've actually had a new babysitter for a week now, I just haven't had time to post! We took the advice of a friend who has a landscaping service and posted the ad in one of the weekly "alternative" newspapers rather than the daily newspaper. She said that her experience was that you got a better group of candidates than from the daily and she was right! We didn't get anywhere near the number of calls (I think maybe 8 total, counting the ones after we hired someone) but we scheduled three interviews, all three showed up and they were all actually reasonable candidates. We called the references of the one we liked the best and she got glowing reviews, so we called her back and she started on Monday! She is having some trouble handling Laurel because she's short and Laurel is tall (I didn't even think about that when we hired her), but I think she's getting it worked out.

Also last weekend, besides hiring a babysitter, we bought a new vacuum cleaner with a HEPA filter and I spent a bunch of time cleaning, plus we bought a Filtrete filter for the heat pump. I think my efforts are paying off - Laurel seems to be feeling better. Although we're still struggling a lot with gas but so what else is new. We tried to go up to the mall this afternoon and had to turn around because she was feeling too bad, and that was unfortunately a long way from the first time that's happened.

Also last weekend we spent a lot of Sunday finishing our Christmas celebration (that was one jam-packed weekend - I spent some time at work and went to the gym, too)! We had French toast for breakfast and opened our stockings, and had the traditional Christmas Eve dinner we would have had in Pittsburgh and opened the packages we'd had to bring home from there. Laurel was actually really into the package opening (she often isn't - I think especially in Minnesota, there tends to be too much stuff going on) and it was a really pleasant day, until the end when my sister called and we talked about my mom. Turns out Mom was convinced that 1) Bob had told her that Marie was going to be there that weekend (of course he hadn't) and 2) all we had done for her was to take her to have her TB test read and go to the store once for her, and we'd done nothing but complain about those things. Of course we did tons more and the only things I complained about were the cat doo (to make a point) and that it was a botheration to drag Laurel up there and that it would be so much easier if Mom would move down here (also of course to make a point). So it was pretty disturbing and depressing that she was remembering our visit that way. Marie says she thinks we won't be able to take legal action successfully until Mom gets to the point of not paying her bills, which hasn't happened yet. I'm almost finding myself hoping it happens soon, because there are already so many other signs that she shouldn't be alone.

Anyway, this last week I took a workshop on "green infrastructure" (interconnected green space to allow for trails, wildlife movement, river protection, etc) that started at 8:30 every morning (I normally work mostly afternoons) and had a couple of evening activities and I wound up being so tired! But it was interesting and kind of empowering - I think I held my own well with a lot of people I would consider more "expert," and also impressed my team when we did our presentation to the class at the end of the week and realized that we were missing a person who was supposed to do part of the presentation and I leaped in and did his part.

Also work-related, as of a week ago Thursday I no longer directly report to the executive director but to the assistant director. It's going to involve some education because she doesn't know much about environmental work, but I get along a lot better with her and I think she has a higher opinion of me than he does, so hopefully this is the start of a better era for me at work.

Meanwhile, I've got a cold but I've been taking Zicam and so far it's staying mild - hopefully it'll continue to do so at least through tomorrow, because we've got the day off and the babysitter doesn't! (She'll get off on Friday though, because we're finally [assuming everyone is reasonably healthy] going to take Laurel up for her program re-eval.) I told Bob I'd have to be pretty darn sick before I wasn't up for at least seeing a movie!

All right, that's the major news from here!

 

January 25, 2005

Fun with insurance, and other Laurel updates...

At the end of November after consulting with a second orthopedist, we'd agreed to do Botox injections for Laurel's ankles, which have gotten very, very tight (we just can't get her feet flat anymore and we think it's gotten to the point that it's keeping her from moving her legs as much as she wants and causing her discomfort). We were reluctant as we've heard some bad things about long-term effects of repeated use of Botox, but the idea was that we'd do it once, get a good stretch by getting new ankle braces or serial casting if the braces weren't enough, and hopefully we wouldn't have to do Botox again. Having made the decision, we were eager to get it over with ASAP and get her some relief, only to find out that the wait for insurance approval would be six weeks, because it's still considered "experimental." (Scratching my head over this one - Laurel's early intervention case worker had CP and she'd been getting Botox since well before Laurel was born.) Anyway, so last week we finally get the letter from the insurance company saying that "the above service is medically necessary." We went up to PA last week for Laurel's program re-eval and so I didn't get organized enough to call the doctor's office to schedule the appt until yesterday, but when I did, I was told that they hadn't gotten anything from the insurance company. So I offered to fax our letter over to them, and brought it to work today and faxed it. Only to get a call back from them saying that they had contacted the insurance company and the company said they had no record of ever sending that letter! The clinic person said she'd call back once everything was straightened out, but obviously, that wasn't today. Ai yi...sometimes I love our insurance company, but other days I just want to pound their collective heads against a wall...

In other news, as I said, we did Laurel's program re-eval last week. I'd say it went pretty well overall. As we are, our evaluator (Ellen) is concerned about how tight Laurel is getting, not just in the ankles but elsewhere as well (shoulders in particular). Not surprisingly, we ended up with a lot of activities to try to loosen Laurel up. One thing Ellen put a huge emphasis on is trying to get Laurel to hold her head level. She got into a really bad habit of tilting it up during the fall. Not sure if it was the drainage or what bothering her but we could NOT get her to hold it level. Now she will do it, but still clearly feels uneasy about it and is still tending not to, so we have to keep reminding her and working with her on it. But Ellen agreed with us that Laurel's eyes are working together better and both she and the trainer were impressed at how alert and responsive Laurel was. Laurel was just doing super at following directions while we were there and Ellen commented again on what a bright girl Laurel is. As well as being a "girl of strong opinions," but basically a good kid. Hey, we knew that!

We also took Laurel to the allergist last week, but she's been doing pretty well since my big cleaning spurt (except for the last couple of days - hoping that it's the cold I had last week, and not the flu that Bob got on Sunday - she *did* get her flu shot, but we didn't) and he said that she didn't really look like she was having an allergy problem. So he gave us a prescription to use for those times that we're visiting and desperate, and told us to keep up the cleaning and bring her back if she gets worse in the spring (which has happened before). So not super useful, but I guess confirmation that she's doing pretty well since we bought the vacuum, filter, etc. But since she'd been mellow lately, we kinda knew that. I had *thought* (especially based on what the receptionist and nurse had said when I made the appt) that he might do a quick skin test or two to make sure we were on the right path in thinking it was a cat allergy, but I think he figured as long as she's doing OK right now, why bother her with it. I suppose he's right and I *am* glad we didn't have to put her through it (she was so nervous at the appt too, until it was obvious he was done with her), but part of me kinda wants to be sure.

Also got a call today to schedule an assessment for Laurel for the aquatics program at the children's rehab center. We've been on a waiting list for...I've lost track now, but I bet it's over a year. Anyway, she has finally swum her way to the top, and I'm going to take her over next Wednesday for them to evaluate her to see if she can work into their program. They might have an opening in a Thursday evening class.

So that's the news for now...we also have a meeting at the school on Thursday, so more to come!

 

January 26, 2005 (1:47 PM)

An honest-to-gosh reasonably quick update.

Laurel is SOOO miserable today! She has a fever, not a huge one (about 100) but we can't bring it down and she has just been screaming and screaming. Bob's had something very flu-like and our first guess is that she's gotten it (although she had her flu shot) but Bob's going to take her to the doc to make sure that's it and that there isn't anything else we can do for her (I feel terrible about not going too but I've got a meeting at work and it seems like I've missed so many meetings lately). She's about as miserable as we've ever seen her and nothing is helping.

The orthopedist's nurse called this morning and said things have gotten straightened out with the insurance company. Unfortunately, she called my work # and I don't work in the morning, and when I called her she was out, but it looks like Laurel will probably get the Botox on February 11.

I had a longer conversation with the aquatic program guy this morning and he decided that maybe Laurel should do a few sessions in the pool with one of the clinic's PTs before joining the class, because the PT will be more able to recommend specific activities to help her. So the eval is off for next Wednesday and I'm waiting for the PT to call me back to schedule with her instead. I'm thinking it might make more sense to hold off until after the Botox, anyway.

So that's today's news...I'll let you know if the doc says anything other than yep, she's got a nasty virus...

 

January 26, 2005 (3:56 PM)

[Posted by Bob] It's the flu. I would have been surprised if the test came back negative. Because we brought her in so soon after the first symptoms, there is some advantage of taking an anti-viral, so we have some of that. It should decrease the severity and length of the symptoms. Flu shots are only effective 70-80% of the time or so, and unfortunately this one got by Laurel's flu shot. Although the doctor was hopeful that the flu shot itself might make the symptoms a bit less and shorter. But her ears and lungs are clear. In a few days she should be feeling better.

Thanks for thinking of us.

 

January 27, 2005

Well, as I feared...I feel like I'm getting sick and our babysitter called and said she's definitely getting sick. She said she'll come today but isn't sure how long she can stay. I started coughing last night but don't seem to be as miserable by this point as Bob was - wondering if that "Airborne" stuff actually helps, I bought it when Bob got sick and took a couple of doses last night and a couple the day before. But I'm still coughing and I feel tired, stiff and leaden. Bob informs me that the anti-viral instructions say "not to be taken while pregnant unless absolutely necessary" and that therefore I shouldn't take it (I love when he decides these things for me ). But I'm conflicted myself. I don't think I really have enough of the symptoms to get it today - I would think if this flu thing is going to happen I would by tomorrow, though. It looks like I ovulated yesterday. The anti-viral is taken for five days, so I guess that would be cutting it awful close relative to implantation. But it's so hard to say, OK, I won't take it and I'll just feel maximally rotten when I've seen how miserable Bob has been, especially considering that the chances of my being PG just aren't that high. Meanwhile, Laurel having had a couple of doses of the stuff seems to be doing rather better - still obviously sick but at least she's not screaming. It'd be a lot easier to decide if I were already PG. Reason #178 why I hate TTCing...

Anyway, I'm slogging into work today but going to excuse myself from my one meeting (I wasn't terribly crucial to it anyway) and make sure I bring stuff home with me in case I'm not there again for a while...

Blech.

 
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