An IEP meeting complete with stars and fairydust May 8, 2008

Today was the semi-annual IEP meeting for Henry and his teachers. IEP stands for Individualized Education Plan, but should really stand for Incredibly Excrutiatingly Long Planning Meeting. So I guess it would be….IELPM? Hmmm.

Anyway, this meeting was actually quite enjoyable, which for those of you out there with kids and an IEP you know how odd that statement sounds. But I’m serious - it was kinda fun. Henry is on track with his plan, and is actually testing right on par for most things, which both thrilled and surprised me. He is just trucking right along, the sweet little stinkhead.

One of the things we looked at was fourth grade. He’s going to pretty much have the same level of support he has now, but he will be allowed to - get this - have an mp3 player for testing. Here’s the deal: I shared with his teacher a couple weeks ago that he concentrates much better with music. So! Now I get to make a mixtape for my ten year old. I’m thinking some Sabbath, a wee bit of NIN, maybe some Ozzy? Oh, I kid, I kid. He’s a John Denver kind of guy.

Bottom line, the meeting went good, Henry is good, and all is well in the world. I even did a little celebratory jig, which was kind of awkward and embarrassing since I realized two seconds after I did such jig that my fly? It was wiiiiide open. Yeah. Way to poke a hole in that bubble of happiness, universe!

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.

Prepare to be DAZZLED November 20, 2007

Watch and learn, people. Watch and learn.

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.

Look what Mahalo made for me! November 16, 2007

Sqweee! I can’t tell you how excited I was to see this:

Here’s the story: if you want the smarties at Mahalo to build you a page, you can Twitter them your request: i.e., @mahalotodo (insert page subject here). I did this last week for 22q deletion syndrome, a little-known genetic disorder that I REALLY doubted they would take on, since it’s kind of super-specific. However, they did, and now I have all my 22q info in one super convenient place.

Why is this a big deal? Well, 22q is a little tricky to find good information on. I don’t have to worry about that anymore. But that’s not the biggest reason I’m excited about this. THIS is why.

Meet Henry, aka Mr. Chub, aka Naked Flash (don’t ask), aka king of my everlovin’ heart. Henry has 22q deletion. Let me tell you what this has meant for our family:

• I was told to prepare for a stillbirth since his left kidney was non-functioning and his right was shutting down; plus, in general, things were just kind of on the sucky side.
• Both kidneys failed after he was born and he was in the NICU for a while.
• He didn’t talk until he was 4.
• He had his left kidney removed. Chicks are TOTALLY going to dig that scar.
• He is hospitalized about once a year (average) for various health problems related to all his “stuff.”
• He has multiple learning disorders that are kinda boring to go into so I won’t. But I WILL pause for some brief bragging: he’s keeping up no problem in 3rd grade.
• He has a full cardiology workup next week because “there’s something wrong with his aorta.”
• He is very emotionally and socially stunted.
• We believe he will probably be living with us long-term. As in, always.

THAT’S the reality of 22q. Amazingly, we got a mild dose. There ARE kids dying from this.

But enough of that depressing stuff! Let me tell you what ELSE 22q means for our family!

• I have constant hugs and kisses. CONSTANT. Sometimes this is a problem. Not.
• He has some issues with putting his clothes on (hence the “Naked Flash”).
• He has a really crazy maniacal laugh, especially when he’s up to something.
• He sings beautifully, even though you can’t understand his words because of his speech issues.
• He’s a great snuggler. Great nap buddy.
• Every single person who comes in contact with him falls in love. No joke.
• He will play Hot Wheels for hours getting louder and louder with the sound effects. Boys!
• He is super sweet in the mornings. Mostly.

I’ll stop there because I’m starting to make MYSELF a little queasy; also, because I need to come to the point of this whole post (I can has a point? Yes, you can has a point!). Even though it’s just a little itsy bitsy thing in the big scheme of life, I am thankful today that I now have a new resource to instantly turn to whenever I have a question about some new thing Henry is showing up with. More than anything else, THAT’s why Mahalo suddenly won me over. I was a bit stubborn there for a while, mostly because I’m a redhead and redheads - you probably didn’t know this - are, shall we say, contrary. I’ll be writing up a revised Mahalo article sometime today over at About.

Henry talks about the current state of affairs November 15, 2007

Henry: Mom, can I have (insert a billion over-expensive toys here)?

Me: No.

Henry: You have ruined my life.

Me: You’ll get over it. Or not.

Calm blue ocean. Calm blue ocean. December 21, 2006

For the past two days, I’ve been doing nonstop laundry. Well, with five people after a four day vacation, what do you expect? So I think I did, oh, something like 15 loads of laundry.

The biggest hurdle in the whole laundry chore thing is the actual folding and putting away of the kids clothes. So last night, I thought it would be fun to sit down with the five (!!!!) baskets of kids’ clothes and watch Bing Crosby’s White Christmas with the kids.

All done, right?

Wrong. This morning, James got a full mug of hot chocolate and brought into the living room even though he had been told five minutes before not to, (you can see where this is going, right?), and Henry got all rowdy and started tossing pillows. One of the pillows knocked the entire mug of hc into the baskets of clean clothes.

So, about five, six hours of work completely wasted. I’m trying to be the Grownup in all of this, but what I really feel like doing is pinching off all of their heads.