Thursday, May 25, 2006

Fumes in the Daycare Center? Only in My World...

Tuesday: I go to pick up the big boys at their daycare center, only to find that they're in a completely different part of the building. (The company that owns the center also owns a Gymboree-like business, housed in the same building. That's where they were.)

When I asked why, I was told that in the roof repairs currently underway, they were using a glue that produced an odor that "smells really bad."

It wasn't until I went to get the boys' things that I realized the place smelled like it had been freshly spraypainted from floor to ceiling! "Smells bad" was the understatement of the decade.

And of course it triggered the boys' asthma, only a little. I felt badly -- they'd been really, really cranky that night, and I'd assumed it was because they'd missed a snack in all the hubbub. When I realized they were both working pretty hard at breathing in their sleep, I felt really bad! I 'd been a little short with them (three cranky kids under the age of five...you tend to be a little short occasionally!). I hadn't even thought it could have been their asthma/RAD acting up. Duh.

Wednesday: I have to say, I'm pretty psyched to finally be in the office three days a week. My plan is to go in Monday, Weds., Thurs, but I have an out-of-town, work-related party today, so I worked from home with Iggy, then dropped him with my Dad at 3:00 so I could make the 4:000 event. I'm happy. It's a gorgeous day, and I'm meeting my CEOs and some co-workers for dinner on the porch of a Victorian hotel. I'm wearing a long flowy skirt and dreaming of lemonade.

I'm about 25% of the way there when my mobile phone rings. It's the daycare. They're closing early because of the fumes. Can I please come get my kids?

I pull over and try to call my husband, because I *really* don't want to miss this event. I *really* don't want to turn the car around and pick up the kids instead of sitting in the sun with my coworkers.

And I'm EXTRA pissed off, because I'd specifically mentioned to the director that I was concerned about the odor because of the kids' asthma, and she assured me all was well. (I also told #1 son that he should ask for his albuterol if his chest hurt or if he was coughing. He's pretty reliable with stuff like this, despite his young age.) I had also spoken to the area director that morning, who neglected to mention the persistence of the fumes.

So I eventually get B on the phone, and he does leave early to get the kids, and MAN is he mad! He's especially mad because he's found out that the center was supposed to close at 3:00 -- and we didn't get called til 3:40!

Do you think they should have called the asthmatic kids' parents first? There definitely are enough of us!

And while I did make it to my event (yea!) I did arrive home to the terrible news that center would be closed today and Friday. :-(

So much for three days in the office THIS week.

The daycare did call the Department of Health, and apparently everything is safe, but they felt better airing out the fumes.

And PS, Little B is coughing tonight.

Do you believe this nonsens. I swear, Icouldn't make this stuff up if I tried!

Sunday, May 21, 2006

B not starting Kindergarten.

Almost forgot. We had a meeting with B's Child Study Team (CST) at his elementary school on Friday. Looks like we'll be waiting to start Kindergarten.

Can't say I'm happy about that. On the most superficial level, I never would have (a) had another baby or (b) bought a new house if I EVER thought I was going to have three kids in daycare at the same time.

On a slightly deeper level, I'm sad because he's SO bright, I really believe he's intellectually ready for school. But his CST is so concerned about his arm-flapping, toe-walking, and impulsivity, they really think we should wait.

What helped us make the decision to wait (we were so against it!) was talking to other parents. Since we are in one of the nation's top school districts, it seems things have gotten very competitive around here. Lots of parents whose kids were born in the summer (like B, an August baby) wait until the following year to start their kids in school. Which means that not only might B be the youngest if he starts next year, he'll be the youngest by FAR. And apparently, kids around here are dating and fooling around by the sixth grade (was that vomit I just tasted?) and the age/maturity difference between B and the others might be so profound, that the social damage could be irreparable.

And nevermind that in this town full of over-achievers, being 10-11 months younger means he'd have to work that much harder to keep up academically, too.

Seems parents of kids without learning disabilities make the decision to wait - sometimes at birth!- so we'll do it while we can. Once we start public kindergarten, there's no going back. At this stage, he won't realize what we're doing, and he's happy to stay at his daycare another year with Oz. (Iggy will be there too in the winter.) If we held him back once he was in the public school system, he'd realize it -- and so would the other kids.

The plan for next year is to put him the Kindergarten class at his daycare (it's certified, but I doubt it's as good as the public school) but send him to the preschool disabled program he's currently attending. Right now, a mini bus picks him up at daycare and takes him to and from the program in the afternoons. Next year, it will be the same.

The CST said he had really made improvements since starting the preschool disabled program in January. Their feeling was that he should have all or nearly all of his problems ironed out by next year.

Their also sending him for a full development evaluation at the great hospital nearby. They're concerned about the physcality of his issues -- the arm flapping, toe walking and head shaking, which all look like autism. He's clearly not autistic, but they'd like him to have an eval. just in case.

Fine by me. I've been trying to get an appointment for an evaluation there for MONTHS and I can't even get a return phone call! I'm taking him to a pediatric neurologist next month at the other nearby hospital...but I'm really glad they're getting us in with other doctors.

I absolutely don't think B is "on the spectrum," but we'll see.

Still some grunting...but very quiet around here!

Just an update -- Oz does still seems to have a bit of grunting in the morning, but otherwise things are quiet. No flares, no colds, no sinus infections, even in the worst allergy season we've ever seen here on the eastern seaboard.

We'll be going to the PP soon just for a check up for both boys. We'll see how that goes. I'm hoping to get Ozzie off the Flovent for the summer (although with the grunting, I don't see that happening) and big B down to the 44. Considering he was on Flovent 22o less than a year ago, 44 is an ambitious goal!

I'm also supposed to take Baby Iggy for a chest Xray. Not sure if I'll do it. I guess I should...what with respiratory distress at birth, a possible case of pertussis and then his turning blue. And he's barely five months old!!! I just hate to do it, not only because of the radiation, but it is such a pain in the ass to take your baby for an Xray at a major teaching hospital. It takes hours, it's horrible...there's just nothing nice about the experience. Maybe they'll let me go to the imagine center here instead.

Anyway. There's your update.

Monday, May 08, 2006

Ozzy's Asthma Flare? More Grunting, Retracting Now, Too

You'd think with one asthmatic kid, I would know when a second one is having an attack.

But Oz's asthma seems completely different. I feel like I'm learning asthma all over again. All the doubting and denial, the wondering if I'm overreacting...it's all so exciting and new again. And I don't mean that in a good way.

Tonight, as with many nights before, Oz was very fussy at bedtime. He wasn't coughing or wheezing as far as I could tell, but he got really whiney and cranky when I put him to bed. You'd think that was just a normal two-year-old thing, but it's not something he habitually does. Usually, he'll just happily climb out of bed and silently find something better to do. (I've found him playing with the glider in the nursery, "reading" in my bed, etc.) He doesn't usually CRY.

When I got into his bed to console him, he was grunting again. When I looked at his belly, it looked like he was retracting a bit. Hard to say - I'm no expert on retractions. But it looked like the skin was sucking in between his ribs a bit. And his breathing was definitely labored.

I wasn't sure...I don't always trust myself when it comes to my kids' asthma. After all, I didn't go to medical school. But even though I half-doubted what I was seeing - I mean, he's TWO, who's to say he's not going to start suddenly crying at bed time - I got out the albuterol MDI and Aerochamber.

Sure enough, he was breathing more comfortably within minutes...and sound asleep.

Guess I'll be calling the pediatric pulmonologist tomorrow.

You Know You're Done Having Babies When...

...You can watch the birth segment of "A Baby Story" and not cry.

I'm there!

New Asthma Resources

Seems like big pharma is really catching on to the asthma craze these days. Suddenly, there are "sponsored" information sites left, right and center. And although I'm more cynical than usual these days, some of these sites are actually pretty useful:

http://everydaykidz.com (Astra Zeneca: Pulmicort)

http://asthmamatters.com (Novartis: Xolair)

http://www.asthmacapitals.com/ (Seems to be related to the Xolair site)

and this non-pharma one:

http://noattacks.org/ (EPA/Ad Council)

And of course, my favorites:

http://www.breatherville.org

and

http://www.lungusa.org

Check them out -- there's not much new to learn at this point, but refresher courses for parents and better ways to explain things to your kids are always a help.

Sunday, May 07, 2006

Grunting - is it an asthma thing?

Ozzie climbed into bed with me this morning, and, when he wasn't pulling on my earrings or trying to stick his fingers in my ears, nostrils, or mouth, and just trying to sleep, I noticed that he was grunting on every breath. Not a low grunting sound, but higher, like almost in his regular vocal pitch, and only on exhale.

Anyone know if this is a regular asthma thing?

He's also been especially cranky upon waking up and a little whinier than usual. But...he's also two years old.

And, can I just say, he is absolutely one of those two-year olds who would shove a sandwich into the VCR. It's a good thing he's sooooo cute.

Wednesday, May 03, 2006

Baby Violet Gets Her First Neb -- Jen, Ben: Start Reading My Blog

Baby Violet Affleck had her first trip to the ER - and, presumably, her first nebulizer treatment - when she was rushed to the emergency room back on April 8. Apparently, baby Violet was having difficulty breathing.

According to the article I read: "Ben Affleck and Jennifer Garner's daughter Violet Affleck was rushed to a Century City medical office because she was having trouble breathing. The 4-month-old was then treated and tested for asthma before being released an hour later, said an insider."

Tested for asthma. Really? How did she do? I didn't realize there was a definitive test for asthma! I'll have to alert my pediatric pulmonologist. I'm sure she'll be pleased to hear the news. Gosh, when I think of all the time we've wasted on pulse oximeters, chest x-rays and peak flow meters. And all this time, there was a test!

Maybe you have to be an A-List Celeb to get one. Sort of like a scheduled C-section (for no reason other than to accommodate Mom's busy schedule).

Oh, and I loved this comment on that post:

"Asthma can be very scary, but it is also very treatable if it not too severe.... The good news is if she does have asthma, the odds are extremely good that she will outgrow it by the time she is 4. Childhood asthma is much more common than most people think. Hopefully, she will be okay and all will be well!"

And it's all good ..until the part about outgrowing it by age 4. Another bit of good news for me! Who knew that we could have taken #1 son off his Flovent, Singulair and Nasonex eight months ago, when he turned 4? Think of all the time and money we could have saved....

Sorry if I'm being uncommonly bitchy, but ignorance REALLY pisses me off.

Monday, May 01, 2006

Baby Iggy Turns Blue; Ozzy has a Flare

Briefly, yes, it's true -- 4-month old Iggy went cyanotic on me on Friday. He fell asleep in his swing, facing me, during the afternoon. He woke up, fussing, and when I went to take him out of the swing, I noticed that his lips were blue. Not blue-tinged -- BLUE.

I didn't completely panic, because he was still fussing and breathing well. But I did put an emergency call in to the peds, who told me to bring him right in.

He was fine by the time we got there, although I was (not surprisingly) a mess. The doctor told me this would probably never happen again. But she said that if it did, it would happen soon, within a few days.

So again, not surprisingly, I haven't slept much this weekend.

Also, Ozzy was coughing all day Saturday, but seemed to do well after lots of albuterol. This morning, though, he was grunting a lot while he was sleeping. I started the albuterol again, and I'm calling the PP now.

What a rough few days!!!

Scheduling with a Pediatric Neurologist: A Nightmare on So Many Levels

I've mentioned before that #1 Son has some "tics" and is currently in a special preschool where he gets physical and occupational therapy. (That's right, folks. My son rides the Special Bus.)

He's an astoundingly smart, outgoing kid. He's articulate, friendly...at age 4.5, he's writing, very close to reading, adding small numbers. And he's nice and polite, too.

The problem is that he's got problems with his fine and gross motor skills and motor planning. He has a hard time holding a pencil, and he tires easily when he's running or climbing things. But he's great at building towers of blocks and he loves to draw things like snakes and spaceships.

He also has problems that, while less inhibitive than the motor skills problems, confound his therapists. He flaps his arms when he's excited. He walks on his toes a lot of the time. He has low muscle tone. These, to me, are quirky things, but they're also some of the visible manifestations of autism -- although my guess is that my son isn't on the spectrum.

So he has these problems, which we've only identified in the last six months or so. (He's always flapped his arms, but we had no reason to think he wouldn't outgrow it.)

Now, as we draw to the end of the school year, his special preschool (which is part of the public school system) is recommending that he wait to start Kindergarten.

#1 Son does have an August birthday, so holding off on Kindergarten a year wouldn't be unheard of. Lots of parents do it. But I do have some concerns about going this route:
  • He's already writing, adding, and ready to read. Is it fair to condemn him to another year of colors and shapes?
  • Public school = free. Another year of daycare = $10,000. I hate to bring that up, but I do have #2 and #3, both of whom will be in daycare. It's a little financially dehabilitating, quite honestly.
  • Will another year of special preschool really help? Or would a year of kindergarten with PT and OT be just as (or more) effective?

In answer to the third question, I've been attemtping to schedule an appointment with a pediatric developmental specialist.

For three months now, I've been attempting to schedule this appointment.

The peds. dev. specialist I've been trying to get him into at the big regional hospital my insurance company prefers (and I love) is so popular, I can't even get a return phone call. If they ever do call me back, I'll have to wait six months for his appointment.

So I tried the big, regional hospital around the corner, which both my insurance company prefer slightly less. Here's how that went:

  1. Dialed, got auto-attendant
  2. Option 2 asked me to leave a message (ha! cos I've had such luck with that at the other hospital!) or hold for an attendant. I hold
  3. Six minutes later, I ask for the doctor suggested by my insurance company suggested, who is a pediatric development specialist.
  4. I'm informed that this doctor hasn't been with the practice for four years, and I'm referred to another doctor.
  5. Doctor #2 is one I've been asked to avoid by my friend, and anyway, she has no appointments available until AUGUST
  6. The attendant recommends a pediatric neurologist -- who isn't on my plan
  7. The attendant recommends another pediatric neurologist -- who *is* on my plan
  8. I hold for about ten minutes while she finds an available appointment
  9. I make an appointment for early June
  10. I smile as the attendant passively dismisses my request to be put on a cancellation list

As if having an asthmatic child with "preschool disabled" classification wasn't enough. Sheesh!