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.
|
|
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.
|
|
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. 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 |
| Home |