Wednesday, June 27, 2007

The Company Picnic

The ferry ride from Jersey City to Randall's Island



Creepy statue fountain women with water spurting from their fingertips

Surely one of the kids would have nightmares later that night


That is, if rock man doesn't beat them to it. He was actually very cool.
He would stand motionless for a while and then he suddenly started to
walk VERY slowly. Charlie tried to engage him, but he wasn't much of a conversationalist

Triceratops, on the other hand, waddled over with much to say

As did the plant from Little Shop of Horrors


Maeve, statue woman and tents with steel drums and exotic birds

With a gazillion kids running around the pirate ship, it was tough
setting up this shot. I looked down at my camera for a moment,
looked back up and Jack Sparrow was holding Maeve and a little
blonde-haired boy. I shouted to Jack, "That's not my son!"

You may be wondering why there's no pictures of the baby.
I know, you never leave a man behind, but .... let's just keep
the picnic our little secret. Ben sat this one out at home where
temper tantrums are more accepted

A slight drizzle as we made our way home

Tuesday, June 19, 2007

On the Eve of the Veto

I'd like to say thanks again to Mr. Bush. You're making the right call.

You're absolutely right. The trash is the best place for the massive surplus of human embryos. Why all the hype in possible cures for juvenile diabetes, Alzheimer's and Parkinson's anyway? Seems a bit much.

I say, don't mess with success. We've been tossing hundreds of thousands of embryos in the garbage since the late 70s. Why stop now? Embryos are flushed down sink drains at in-vitro fertilization clinics while still alive. Others are incinerated while still alive. Other clinics decide it's best to expose the embryos to the air and let them just die over a four-day period. I say leave 'em be. It's a winning strategy.

Anything else would be, well, unethical.

Friday, June 15, 2007

He's Number One

We met with the guidance counselor and the school nurse in a tiny, cluttered room. 2 v 2 like a doubles ping pong match.

"So, tell us about Charlie," the guidance counselor says.


Where do we begin. Once we got rolling, Susanne and I were throwing everything at them. Over three and a half years of observation of what diabetes can do a small child to be summarized in about an hour. We were finishing each other's sentences and we were a bit all over the place, but we stayed on the same page.


The two ladies tried to keep up with us, scribbling feverishly in their notepads.


Glucagon


Call 911


Check ketones


Rub cake icing on inside of his cheeks


There was some heavy gasping at times from the guidance counselor, who we happen to like a lot. They tried to play it somewhat cool, saying they've been through emergency situations at school before, but their body language was more like, ohmygod, ohmygod, ohmygod, ohmygod, ohmygod. I've said this before. That's OK with me if they're scared. I want them to be on heightened alert. And to be fair, we were throwing some frightening possible situations at them and talking in a language of blood sugar numbers and boluses that they are not familiar with. It was literally a crash course. They have every reason to be nervous.


Early on, we almost went into attack mode when the nurse sort of questioned why after all this time, he didn't have better control. Susanne slowly retracted her claws and explained to her how he is a growing boy and his insulin needs are often changing. She also explained the gazillion variables such as stress and sickness that could wreak havoc on his blood sugar.


At one point Susanne told them he's a good boy. He doesn't have many friends (who are boys) and he's just so excited to go to school. Please just treat him like a normal boy. He's not normal though, she said under her breath. Her voice quivered a bit. I looked to her to see her eyes get glassy and tear. In doing so my eyes did the same.


In the end, they told us what we really wanted to hear. No matter what, Charlie will be number one. He comes first. They mentioned they have a child with a bee sting allergy and also a 4th grader with diabetes who is apparently on auto-pilot. Never any issues. But, Charlie's needs will always come first. They also mentioned that Susanne can come into the school anytime. We all agreed that it would be beneficial for all involved if she did this for the first week or two.


And then a couple things we really didn't want to hear. The questions of the day from the nurse.


"When you give the Glucagon, do you inject right through the clothing?"


"So just to be clear, we give Glucagon if he's under 80?"


Uh, no and no. Oh dear. Should be an interesting school year.


Last thing. When we handed a copy of our proposed 504 plan over, the nurse asked incredulously, "How did you? ... Where did you? Who helped you with this?"


Thank you to all of those trailblazing parents of children with diabetes. You have given us rookies the resources and the words of wisdom to fight the good fight for our children's rights.

Tuesday, June 12, 2007

Sending Charlie to School - Seeking Advice

On Thursday we will meet with the school's guidance counselor and principal to discuss Charlie, who will be entering kindergarten in the fall and leaving our sight for the first time.

This is just the initial meeting. In phone conversations with my wife, the guidance counselor admits they're a bit scared. They've had a couple of kids with diabetes in the past but never as young as Charlie.

We plan to come to this meeting armed with a 504 plan and will basically just explain to them how we expect them to care for him while he's in school.

Obviously this is very new to us. If anyone has any advice for this initial meeting, I would greatly appreciate it. Are there questions we absolutely should be asking? Demands we should be making? As part of the 504 plan, is it alright to insist that "mother will have full access to school grounds where she will sit perched in cherry tree outside Charlie's classroom with binoculars for duration of school day."

I've certainly read some of your horror stories on the topic and that makes me uneasy. But, for now, we're not there yet. They just want to know all there is to know about Charlie.

Thursday, June 07, 2007

Dream a Little Dream of Dead Sharks

Thank you to those who offered their support and suggestions in what was the worst 48 hours of high blood sugars we've experienced with Charlie since just after diagnosis. I'm thrilled to report that things are back to normal. And of course by normal I mean 50 percent of the day in range, 25 percent high and 25 percent low. I suppose we'll never really know why it happened. Although, we're keeping a close eye on his poop. Recent suspicions have floated to the surface. (Sorry, couldn't resist. What's wrong with me. Filthy animal).

Anyway, on to the dead sharks. In the second night of horrible highs, Susanne and I were up all night checking his blood sugar, checking level of ketones and correcting. In the midst of this awfulness, I did manage to get intermittent sleep between the hours of 4 am to 6 am.


I dreamt I was in a car trying to get home. The road cut right through a large body of water, so I had water all around me. Up ahead was a large obstacle in the middle of the road. From the distance it looked like a mountain. I approached it to realize it was indeed a mountain. A mountain of dead sharks and killer whales. Hundreds and hundreds of dead sharks piled on one another with their menacing mouths agape. Trying not to drive on the dead sharks, I drove along the side of the mountain at an impossible angle, defying gravity, where a narrow strip of sand met the water. And then I awoke.


The dead sharks was a jarring image, like a mass grave. I think I even stepped outside of the dream for a moment and said, "holy shit!" We've talked about dreams before. Why did I dream this? Why did I create such an image? Is it related to what was going on with Charlie? Or was it the result of the acid I dropped earlier that evening? Any thoughts? Any theories?

Tuesday, June 05, 2007

A Heaping Batch of Burning Eyes

We had several helpings of highs at La Pi├Ęce de Charlie last night that began with a lovely complimentary appetizer - fresh infusion tube stuffed with a light burgundy ├Ęgoutture de sang (blood dripping). Out of this world!

Oh, hi. My son Charlie will have the number 320, the number 380 and then the number 410. I know, he's very hungry. Sorry, I hate to be a pain, but can he also have a syringe on the side? With 1.5 units of insulin? Yeah, you can just bring it out with the 410. Thanks.

How are your ketones here? Large? Mmm, sounds really good. Hmm, we DID just have large ketones the other night. What to choose, what to choose. You know what? That's fine. We'll take the large ketones. We'll make room for it.

Do you recommend anything that goes well with the large ketones? Ooh, sounds so exotic. Sure, we'll try the projectile vomiting. I suppose 8 ounces will be plenty. Oh, and a bucket. Does that also come with dry heaves? Cool.

Well I guess that covers it. Wait, sorry. One more thing. I don't see this on the menu, but we had this once before and absolutely loved it. Do you think the chef could whip up a small portion of crying baby who refuses to go back to bed? Preferably while we're having the projectile vomiting. 2 am? Perfect.

OK, last thing. I promise. What time do you guys start serving room service in the morning? 6:30 am? Super. If possible, my wife and I would like to share a heaping batch of the burning eyes.


Fantastic. Thank you.