We just got back from out of town late Sunday night and I've been really busy. We had a pretty good Christmas season, better than last year anyway! At least nobody was violently ill this year. I had a little cold (not bad though) and Laurel had some allergy problems in Pittsburgh - after three sleepless nights, I called her ped and bugged her to let us use an antihistamine. She said we could use Claritin and we all slept a lot better the last two nights. (HA! I KNEW she had allergies!) We found a couple of things to do that Laurel thought were fun. In Minnesota, we took her to "Underwater Adventure" at the Mall of America which is this series of huge fish tanks with a tunnel through them so that you have fish on both sides and above you. When we got through the tunnel, there were a few regular fish tanks at the end, and Bob showed her part of them and then sat down. She started to cry and we couldn't figure out why until Bob stood up and took her to another tank and she stopped and we realized that she wasn't done looking at fish yet! In Pittsburgh, we took her to a drive-through light display that took almost an hour to go through - she wore out before it did. We also got my MIL to watch her for 24 hours again while we stayed at a hotel, went to the Mall of America and saw LOTR III. And generally enjoyed visiting. (I have to guiltily admit I didn't miss the twins stampeding up and down the hall this year - they went to TX instead. Laurel did a lot better with less commotion as well.)
So those were the highlights; the definite lowlight was the night that Bob scraped the side of the van against a guardrail that had obviously been hit before and was twisted and sticking out way past the curb. We had a nasty fight that evening too. It had started before then, because Bob was mad at me because I got back from shopping later than he thought I should have and I was mad at him for being mad at me a lot lately. (Would you believe he got mad at me when we were watching a rented movie because I wasn't paying attention to the movie while Laurel was coughing and looking like she might throw up? "*I* could do it," he said.) Anyway, we had just gotten things patched up enough to go to dinner when the guardrail thing happened and we were off and running again. (Not because I was mad at him for hitting the guardrail! Because he was mad at me for wanting him to eat dinner, or at least not to sit out in the car while Mom and I ate dinner.) It was a horrible evening but we've been doing better since and I think we're going to take my mom up on her offer to pay for the repair. We just don't have $1200 right now, don't want to run our insurance up, and it's too sad to have that horrible gash on the side of our 2-month-old van.
On the brighter side again, Mom was doing better this time than our last couple of visits. She went out to eat with us several times, went out grocery shopping and came out with us to see the light display. I tried showing her how to use her e-mail again too, a friend who used to live across the street from her asked her to send an e-mail. I hope she does!
So, right now we are trying to get caught up on
things. Yesterday I mailed off the last of the model train cars I sold
on eBay before Christmas (the buyer was traveling and didn't want them
sent sooner). They were my dad's and my mom said I could sell them if we
spent the money on Laurel. Would you believe I made $1200!! I am putting
the money toward hopefully taking her for some intensive therapy next
summer. Next up, we're tearing the finished part of the basement apart,
getting ready to paint and then recarpet! (We don't have to pay for the
carpet until the end of the year.) It hasn't been repainted or
recarpeted since the house was built 25 years ago so I'm *really*
looking forward to it although very nervous about the work (it's a huge
room and needs a lot of cleaning and things moved to somewhere else) -
especially when things are getting really really busy at work, too. It's
going to be a crazy month - but now at least if you don't hear from me
again for a while you'll know why! 
*Phew* It's been a rough couple of days, but Laurel is starting to feel better. She came down with another cold last week. On Tuesday, the school reported she was fussy, although the babysitter said she was OK. But Tuesday night and all day yesterday she was just inconsolable. I took her to the doc yesterday morning and sure enough, she has an ear infection! We had really hoped that we had moved past those when she didn't have one for something like a year, but she's had two now this season. This seems like one of the worst ones ever - we gave her Motrin *and* Tylenol *and* ear drops and nothing seemed to touch it much. We've had two really rough nights, but this morning she finally seemed to turn the corner and slept most of it (we kept her home from school again, she needed the rest). She was snoozy but peaceful when I left for work. And again I say, *phew*! Now if we could just get Bob over *his* nasty cold...and if I can keep from catching anything...
Great news from Laurel's endocrinologist!
We took her last week for another blood test for her ACTH level and
got the results back yesterday. For some background and context, the
normal range for ACTH starts at 9 (I have *never* known what the units
are); hers was less than 1 when she was in the NICU and then for a long
time it was stuck at 8. At her last blood test, it was 13 and we were
allowed to drop one of her three daily doses of hydrocortisone (which
she takes because the low ACTH resulted in a cortisol deficiency;
cortisol is a hormone that helps your body deal with stresses such as
illness). Well, her latest result is 23! So we can drop another dose and
take her back in four months for another test, after which hopefully
she'll be off hydrocortisone all together! We are really hoping that
this will be a great year for Laurel coming off meds, actually. Next
month is her 2-year anniversary of being seizure-free and by rights we
should have an appt with her neurologist then to talk about taking her
off her seizure medication. Only, and this is really pi$$ing me off,
they keep putting off our appt until now it's in MAY! It just doesn't
seem right that Laurel should have to be on the meds an extra three
months. I was talking to Laurel's pediatrician's nurse about this the
other day and she thinks I should call up the neuro's nurse and hassle
her, but I'm not convinced it will get me anything. I will be SOOO happy
if we can say goodbye to those folks this year. It looks like we should
hopefully be down one doctor soon, anyway! 
But in less-happy news, the sick fairy is still at our house.
After having a pretty nice, mellow day yesterday, Laurel seemed to be feeling rotten again this morning. She seems like she's getting stuffy again and I'm worried that she's coming down with a different cold, like maybe the one Bob's had isn't the same one she had. He is still in "shoot me now" mode with his, so I stayed home from work this morning to take care of Laurel (who didn't have school anyway since it's Lee-Jackson Day, don't get me started) while he caught up on his sleep a little. I blew out some nasty-looking gunk myself this morning but actually I feel better than I have in days (I've kind of felt like I had a little cold myself, but I wasn't sure if it was a cold or just allergies) so I'm hoping it's the end of one and not the beginning. Please send get-well vibes, if you have any to spare - thanks!
Wow, we seem to be having a hard time kicking this ear infection...at least I hope that's all it is. Laurel has woken up the last couple of mornings screaming (probably about the time the Motrin wore off) and this morning she was running a temperature of 99.9 under her arm. It dropped a degree with Motrin and she calmed down but I called the ped's answering service b/c it seemed to me like this shouldn't be happening this long after starting the antibiotic. As it happened though, she got too low a dose Wednesday and Thusday morning b/c the prescription was different from what the doc had said (2 tsp 2x a day instead of 1 tsp 2x a day) and at first I didn't realize it and then it was too late to call the doc's office. It turned out it was a lower strength than prescribed so we really were supposed to be giving her 2 tsp, but I hadn't wanted to take a chance on overdosing her. So the nurse at the answering service said that it could take up to 72 hours from the first full-strength dose on Thursday evening for her symptoms to subside - it's sure never taken this long before though, and usually she doesn't even run a fever with an ear infection (she did have a slight one on Weds. when I took her in though). I checked to make sure she looked OK around her button and she does (it's been leaking like a sieve the last couple of days though, after being fine for weeks). If she's still having problems in the morning, we're supposed to come in (at least they're not closed for the holiday). At least she's calm right now and doesn't seem warm; I'll feel better if she wakes up OK in the morning though. Guess we could use a few more get-well vibes! (At least Bob is starting to feel better...)
We got back last night from another re-evaluation for Laurel's program. I should write more about it later, but one of the things that came up is that we are using commercial baby food for Laurel's oral feedings. Well, darn it, it is pretty hard to come up with time to cook and puree stuff for Laurel on top of everything else, but I have to agree with the evaluator that I'm also concerned that the flavor variety (and just the flavor!) is not the best. So, we are thinking of getting one of those baby food cookbooks. I'm a little leery of "Super Baby Food" because I read that it's vegetarian, and I think with Laurel's milk and soy protein problems she'll need the meat protein (she has been doing fine with chicken, beef and turkey in oral feedings so far). Any thoughts?
January 28, 2004
We are so proud of Laurel!
Last night she tried Spaghetti-O's for the first time and she did SO well with them! I told her she needed to chew them and she dutifully chewed each bite, with only one really minor gagging incident when a little teeny one got in a funny place on the back of her tongue (she dealt with it like a champ, though). She only ate about a teaspoonful of them because I was only giving her a few at a time and it was clear that the chewing was tiring her out, but I'm sure she'll be able to eat more with practice! (She also ate 3-4 oz. of purees yesterday.)
Also, at her
NACD evaluation, her evaluator (Ellen) decided that she seemed to have
mastered one-step directions so it was time to move on to two-step
directions. So, we have an activity on her program now called
"Treasure Hunt" where I'm supposed to set up four familiar
objects on a tray, then before she sees them tell her which two to look
at ("first look at the car, then look at the penguin"). Then I
bring the tray within her range of vision and see what she does. I've
done it five times so far and she's gotten it every time! Otherwise,
Ellen wanted us to really push on oral feeding (which I think Laurel is
in a great place for now
) but we are backing off on some of the
other activities, like the stuff to try to get her to crawl, and working
some more on her sensory and vestibular (inner-ear) issues. Ellen felt
that she had backslid, and I agree.
We are actually going to take Laurel on Sunday (was supposed to be yesterday, but we stayed home because our road was a solid sheet of ice) to see how she does with this therapy called Sensory Learning which is supposed to be great for sensory integration and vestibular problems because it addresses the auditory, visual and vestibular systems at the same time. It's *really* pricey (more than twice the $1200 I made selling Dad's model trains), but we got a very strong endorsement of it as being likely to really help Laurel from one of her former OTs, who helped set up our local center right after she quit as Laurel's OT last spring (but is no longer associated with it due to personality conflicts with the person who's running it). So, if Laurel tolerates it all right we will probably do it.
That's the latest Laurel news! She has been feeling well and in a
good mood the last few days, I had fun staying home with her yesterday
(she's been mostly my charge the last few days as Bob's been working on
the basement) but now back to the grind. 