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.

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.

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.