Updates on Laurel: June 2005 |
| More or less as posted on the November '00 Playgroup on eboards4all or the "Over 35 and Hitting Our Stride" board on Network54 |
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June 9, 2005
Here's a picture of Laurel laughing... Tonight apparently my blowing my nose (Bob and I got sick just as Laurel was getting over the croup - we're almost well again but I'm in "drainage phase") was absolutely hysterical. Laurel has still only laughed a few times and none recently (while awake - yesterday after going into a moon bounce with her teacher she woke up from a nap laughing hard) but there was something about this that was just TOO funny. Bob said she actually started not when I started blowing my nose, but when he told her I was blowing my nose - but then every blow after that just sent her back into hysterics. Then that made Bob and me laugh and for the first time the three of us all laughed together! And I fortunately had the presence of mind to grab the digital camera off the desk while I was laughing and blowing my nose so here you have it, the first-ever picture of Laurel laughing:
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June 10, 2005
Odds-and-ends update... Like I said last night, one or more of us has been under the weather since my laparoscopy over two weeks ago, so I haven't had much ambition for posting, but a few things have happened. A week ago Thursday we had Laurel's rescheduled IEP. The "team" took our announcement well that we were going to work with a private SLP over the summer and revisit the feeding goals in the fall. I'm not looking forward to that fall meeting much, but at least unlike the last one where I felt blindsided I have tons of time to prepare. With that off the table, the meeting went fairly smoothly, although it took a long time, partly because we still asked a lot of questions about her other goals - we were concerned that a lot of them didn't look challenging enough, but we are mostly satisfied with the explanations we got. I think we will just stick with the feeding battle for now, anyway. And now at last we FINALLY know what the plan for the summer is - she'll be going to the summer program from July 11-28 (would be till Aug 4 but we're taking her to San Francisco for conductive education/Feldenkrais for three weeks, and if we went any later she'd miss the first week of regular school) to keep working on using her head switch and her stander. Today we went for the nutritionist appt. It was *really* frustrating because the nutritionist was apparently off for the day but nobody had marked her schedule that way! So they had people scheduled for her all day long and she wasn't going to be there. After we'd been waiting for an hour, the manager came out and said that they had finally confirmed that she was definitely out and that they were going to have a nutritionist from the hospital (part of the same system but a different location than the children's rehab center) come over. *Finally* after almost an hour and a half, we got to talk to a pair of interns. The "lead" intern (she is going to finish her internship and be the pediatric nutritionist at the hospital in three weeks) said that she thought that if Laurel would tolerate it, we should really switch to a soy formula. She recommended one of the "follow-up" types of formulas. She felt that whole protein would be better for Laurel's digestive system (than the highly-digested Neocate) and that the benefits of that outweighed the risks of a long-term soy diet (heaven knows Laurel's digestive system could use for something to be better - she still has a lot of problems with gas and regularity). She also recommended upping both the amount and the concentration somewhat so that Laurel will get more calories. I'm nervous, seems like a lot of changes, and I don't have as much confidence as the nutritionist does that "there haven't been any studies showing a problem with soy yet so it must be OK," but on the other hand it would be wonderful if the soy formula made her more comfortable. It sure would cost a bunch less and be easier to get too. (I bought a can of "Enfamil Next Step Prosobee Lipil" at CVS for $14, but looking around on the Internet it looks like we ought to be able to do a couple dollars a can better than that - meanwhile Neocate's been at least $20 a can on Ebay.) So I guess we'll go for it, but take it slowly. In other news, AF started on Sunday and I am so pleased to report that I had *one* cramp. I'm hoping that this means that the laparoscopy accomplished something after all, since the last few periods I've had were pretty mind-numbing. Making up for lost time, I had another annual review. (Yes, I just
had one about a month ago, but that was last year's! This was this
year's.) Because I just had one, we really talked more about goals than
about how I was doing but I did find out that for the next fiscal year
(starting July 1) I'll be getting another $100/month. My salary will be
revisited one more time in a couple of months when they finally finish
looking at comparable jobs (they're doing this for the entire agency).
Let's hope they decide I'm grossly underpaid. And finally, we just had a carpenter install a new ramp on our front porch; he also trimmed the storm door so the threshold ramp we bought would fit under it, shored the front porch up and replaced a couple of rotted posts under the back deck. So now it's safe to go out the doors again and will be a lot easier with the wheelchair. It feels good to have that done! OK, that's the news!
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