Updates on Laurel: June 2002

Ten things about Laurel:

1) She has SO MUCH hair. This is always the first thing anybody comments about when they see her. It's gotten lighter as she's gotten older (it's light brown now) and also gotten curlier!

2) She falls asleep during her last feeding, and for Bob, she'll stay in a sitting position, but for me, she insists on skwunching herself flat (we like to keep her more upright so she won't throw up). I guess she knows mommy is a pushover who will give up eventually. She often kind of smirks when she finally wins. And then goes right to sleep.

3) The single most likely song to calm her down when she's upset is "Leaving on a Jet Plane."

4) Her favorite toy is probably this thing made by See'n'Say that has farm animals that make noises when they're pushed or pulled. She also likes toys that make clicking noises.

5) She almost never says anything unless she's upset or bored. No words yet, but some interesting combinations of vowels and consonants.

6) She loves to bounce.

7) She loves to be carried. She's getting pretty good at holding on tight, and sometimes when I squeeze her she squeezes back.

8) Her favorite color is red. She will look at red things better than any other.

9) She's definitely come to expect that when one parent is sitting in the tub and the other is taking your diaper off while sitting on the toilet, this means you're about to get a bath. The other day I took her diaper off and realized she needed to be wiped, and she did a total double-take when I took her back out to the changing table instead of handing her to Bob.

10) True to her parentage, she's not much of a morning person, either.

Well, I've been meaning to write a comprehensive update on Laurel since before she turned a year-and-a-half. At least I'm squeaking in before she turns 19 months, but not by much!

The most exciting news that we've had in the last several months was that her seizure medication has dropped below therapeutic blood levels - but she hasn't had a seizure since mid-February! That (and all of her seizures in the last few months) was while she was sick, but she's been sick I'm thinking three times since, with no seizures. Her pediatrician's explanation was that some kids with brain injuries have seizures while the brain is scarring because it puts pressure on the brain, but then the seizures stop once the brain has finished scarring (if this explanation makes you squirm, I'm right there with you. Eccchhh...brain scars...). She thought that this might mean that Laurel will be able to progress better now. I tried to talk to the neurologist about whether this might also mean we could take Laurel off the medication (if it's not needed for seizure control, why subject her to the side effects?), but I never got past the nurse who simply said, "He said to keep the dosage the same." Her next appointment with him isn't until September. At any rate, I remember when she hit this blood level going up on the medication, and she was seizing like crazy - so there's no doubt she's better!

More good news is that she's finally learning to play with some toys. She likes a See'n'Say toy with farm animals that make sounds when you push them or pull them, and also a couple of different toys with little arms that make clicking sounds when you push the arms. We've also got a little plastic Elmo that holds a puppy that plays tunes when you push it, and although she'll push the puppy she seems much more fascinated by the fact that (depending on how tightly I hold it) she can get Elmo to either rotate or thwack against my hand. She is also getting better about using her hands for other things, like holding on. And she seems to be seeing better - we've seen her track a few things and she makes more eye contact - although often with the toys, she looks to one side, leading us to wonder if her peripheral vision might not be better than her central vision (often true in cortical vision impairment).

Probably the single thing we're feeling most discouraged about right now is her feeding therapy. That is just going nowhere and in fact, we feel that she's gotten worse. In January we were so excited by the fact that she would drink up to an ounce of juice at a time! But then she got a bad stomach virus and totally lost interest and has never regained it. Not only that, but when we do get her to take some, she often pushes the juice and food back out of her mouth. Her feeding therapist has been coming very irregularly but has now quit, so I'm hoping maybe a new therapist will be both more consistent and have some new ideas.

The new feeding therapist is actually also Laurel's occupational therapist! She'll now be coming twice a week instead of once. We started with her at the end of April, and she's been working a lot on vestibular (inner ear) issues (we think this is a major reason Laurel still often panics when she's put on her back) and somewhat on Laurel doing things with her hands. We've found out that Laurel really likes to bounce! She really likes her OT, although the OT's singing is driving Bob nuts. She's not so crazy about her PT, and sessions have been a mixed bag lately. It often seems like her tummy's bothering her about that time. She is getting better about rolling on her own, and her lower back seems like it might be a little stronger, but sitting on her own, let alone getting around on her own, still seem a long ways away.

She is also probably going to start speech therapy soon. She makes a variety of interesting vowel and consonant sounds when she's upset or bored (not much at all otherwise) but no words yet. Both her PT and OT are working on trying to get her to indicate if she'd like "more" by looking at them. We think she might understand a few words, but we're not positive.

And finally, we're going to start a program called NACD (National Academy for Child Development, http://www.nacd.org - the website seems to be under reconstruction, though) this month. On June 14, we'll drive up to West Chester, PA for her initial evaluation, and they will give us a 2-hour program to do with her every day. They address a number of different areas, including mobility, language, and vision. I have heard good things about them from other parents who have done the program - I know of a couple of kids who weren't crawling when they started but are now walking, and some other encouraging stories as well. I'm nervous about how much work it will be but think Laurel could really benefit from a more organized approach than we've been taking.

Think that about covers it...I'll write another update when we get back from NACD and let you know how that went!

Laurel got her "button" (g-tube port) changed this morning and it went pretty well. And her weight's up almost 2 pounds since her 18-month check-up! Not quite, since she had her clothes on today and she was naked for the check-up, but she was 19 lbs 14 oz then and was 21 lbs 13 oz today. Guess it's finally safe to turn the car seat around. (Her PT said she thought Laurel could handle it, and her ped said "whatever the PT says." We've just been waiting for her weight to get high enough.) I *thought* she had filled back out after she got over that last GI bug. :-)

I guess I spoke too soon about things going well. Laurel's babysitter called me to say formula is leaking from around the button. It's closed, but Laurel's gotten soaked. Twice. I called the doctor's office, but they told me they thought it was just that the skin had pulled away from the button and it might take several days to close up again. (Funny, this never happened before.) Meanwhile, we're to try to snug it up with gauze splits and use a protective cream. Bob went to go get her so he could play with the gauze and see how bad it is for himself. Hoping this is a short-lived phenomenon...

Well, after a couple of days of fussy baby and even more days of baby dealing particularly badly with position changes and being laid down, we hauled her off to the doctor this morning to rule out an ear infection. Her ears are sparkly clean, so I guess it's something else. She does seem to be having more gas since her button change, so that may be part of the fussiness (I think it's because the valve on the old one was letting so much gas out [not to mention formula]). We've been trying to vent her, though (there's a tube for that that's designed to go through the valve), without much success.

She's also been throwing up a bit more and seeming more gaggy, but her ped thought that raising her Prilosec dose might help - she's gained a lot of weight since she was first put on it! She was 22.9 pounds today with her clothes on, which means she should be getting 3 ml of the suspension - and she's only been getting 2. So hopefully that will help.

Her button is STILL leaking some around the outside, especially if any pressure is put on it (if she leans forward or is put on her tummy), so I called the surgeon's office today - but they said there's nothing to be done, just give it time. It's been almost 2 freakin' weeks already...

And wouldn't ya know it, after getting a clean bill of health this morning she's sneezing up a storm tonight. She's been sneezing for weeks, and we discussed whether she could/should be put on an antihistamine with the doctor this morning (she has to check with the neurologist, because many antihistamines lower the seizure threshold). But now she's REALLY sneezing a lot and starting to produce some questionable-looking stuff out of her nose.

Anyway, I'm sorry I haven't gotten the NACD update up yet - I'm still planning on it! But I've just been swamped between actually trying to get the program going and trying to get all my projects wrapped up at work by June 30. Hopefully soon!

The poor kid definitely has a miserable head cold! We're not exactly doing a lot of program with Laurel today. Her nose and sinuses are full of gunk, she's been mostly either crying or whimpering all morning and when she's not, I just don't have the heart to do anything that might set her off again.

We could use a few prayers tonight...Laurel's been screaming hysterically since 6 PM. Tylenol didn't touch it. Ear drops didn't touch it. Although, I have to say I'm suspicious of an ear infection anyway, since she's just getting over a cold. I called the answering service and ended up talking to the doc on call, and he told me to go get some Motrin and give it to her, which I just did. She's not running a fever and she's pooped so he's not TOO worried, but if she doesn't calm down in half an hour we're supposed to call him back and probably go to the emergency room. Please pray that this does the trick...

Thanks for the prayers, I think they worked (that, plus the motrin). She calmed down within about 10 minutes of getting the motrin and she's been asleep ever since then. She didn't even wake up when I [Bob] changed her into her sleeper. For about 10 minutes after she fell asleep I could still feel her relaxing as the minutes went by (she was in my arms at the time). Poor girl.

We'll likely take a trip by the doctor's office in the morning to have her ears looked at (and if they looked clean, probably she'll get poked at in other places too).

So, thanks for the prayers, the motrin will wear off in about 5 hours so I need to get some sleep.

Yup, Laurel has a bad ear infection. Her ped said her left eardrum is hemorrhaging! So, another round of amoxicillin for her.

She's been so much calmer since we started the Motrin. But I feel like such a bad mommy! I SO wish I'd called the answering service sooner last night - I didn't do it because I was really pretty convinced she had an ear infection, and I figured we'd already done everything we'd ever been told to do for an ear infection (Tylenol and ear drops). I know other kids get Motrin but it's never been brought up as a choice for Laurel so I never really thought about it (I guess I kind of figured there was some reason she shouldn't have it, like there is with the antihistamines). And also, because ALL of her other ear infections have been in her right ear (she's had three right ear infections and one double ear infection, but even that one was a lot more severe in the right ear) I'd only tried the drops in the right ear. Man, do I feel like an idiot. Guess I'll know better next time.

Last night Bob stood Laurel up on his lap and, for the first time, she engaged her lower back and stood straight up! She loves being stood up but has always kind of slumped over. Last night, it was like she found her lower back and she stood straight up and looked just like a "normal" toddler standing (well, if you didn't look at her feet - she was still standing on her tippytoes. I suspect her PT is right that we will have to get her AFOs). She looked SO pleased and proud of herself, even before we started praising her to bits! :-)