Thinking good thoughts, but also muttering “shit! shit! shit!” February 22, 2008

So we got the big call from the cardiologist today, and it wasn’t good news. Henry has the vascular ring thing, yes, and it looks like it’s compressing both his trachea and esophagus, so he’s most likely going to have to get surgery. The cardiac surgery team will be meeting Monday at OHSU to figure out if this is indeed the route they want to go.

Give your kid(s) big hugs and play with them LOTS today for me, okay?

Good thing he likes the doctor February 18, 2008

Seems like these things come in waves, don’t they? At least they do in our family. About two months ago, we had Henry go through a routine cardiology screening, something he should have gotten a long time ago because of the whole 22q deletion thing (usually it’s the kidneys or the heart that are bad, VERY rare that both are screwed up). What the doctors found was something called a “vascular ring”, which basically means that his blood vessels, aorta, etc. are wrapped around his trachea and esophagus.

Yes, that is as bad as it sounds, but crazily enough, he has NO symptoms, which has stumped the good doctors up at OHSU. Usually, kids with this are unable to swallow, they’ve got crazy asthma, and lots more fun stuff. But Henry’s got nothin’, which means that he’s got a whole team of befuddled cardiologists trying to figure out how he’s got this awful thing with nothing going on.

So! Tomorrow, he gets knocked out and undergoes an MRI. After that, he will be evaluated by said cardiology team to see if he gets to have his chest cracked open and his aorta repaired.

I’m trying to be glib and funny and witty about this, but I. Am. Terrified. He’s already gone through so much. I just am not trying to think about it, I guess. Prayers and good thoughts appreciated.

Why Henry should not get a credit card anytime soon January 30, 2008

(watching TV for a few minutes last night while waiting to tape “American Idol” on our VCR (yes, we still have a VCR, we are not a Tivo family (yet)) (and can you believe how many parentheses are being used right here (seriously??!?))

So a commercial comes on about term life insurance and Henry turns to Dad and says “WE NEED TO BUY THAT. YOU NEED TO CALL RIGHT NOW.”

Dad: “Do you know what life insurance is?”

Henry: “NO. BUT WE NEED TO BUY IT. CALL RIGHT NOW.”

A few minutes pass. Another commercial comes on for some kind of cleaning product.

Henry: “I think that we need to buy that. Let’s buy that. Come on. Let’s buy that.”

(TV goes off, Henry starts applying for various credit cards online, he becomes a QVC addict, we declare bankruptcy, he flies to Vegas and becomes a card shark in order to pay his debts, decides to become one of those people who wears gold medallions and pointy shoes. (None of that really happened, but I needed another excuse to use parentheses.))

Children with special needs are difficult. January 27, 2008

So we have a child, Henry, who is 10 years old and has a genetic disorder called 22q deletion syndrome, which basically means he’s missing a vital part of his DNA. It also means that sometimes? HE IS A GIANT PAIN IN THE ASS.

Case in point: this morning, in obedience to his dr’s orders of getting at least 8K steps on his pedometer a day (he’s a little chunky), D tried to take him on a walk. I couldn’t go because Emma is sick and wants Mommy. So what did Henry do? Well, he threw the fit to end all fits, and all our neighbors probably are calling CPS like right this second.

See? That’s the unseen quirk of kids with special needs - sometimes, you just want to pinch their little heads. If he wasn’t such a godforsaken cutie pie, he would have SUCH a head pinching today.

The next Weird Al November 19, 2007

Do I have a TREAT for you sometime today (now if that’s not a vague promise, I don’t know WHAT is). For some inexplicable reason, I bought Henry one of those annoying kid’s accordions from the local extremely overpriced toy store - you know the kind, the one that charges like fricking $5.99 for a TOP because it’s “educational”. Educational, my ass.

Anyway, Henry has decided to go all Weird Al with this accordion, and I got it ON FILM. So once I figure out how to upload the footage to this here thing called the Internets, I will share it with you. However, while you’re waiting, please watch this:

You know, just to whet the appetite.