On The Air!

Jackson's radio debut! He we all are at the WKLH Miracle Marathon for Children's Hospital. We shared J's story and hopefully it inspired people to donate big! Honestly, it was such a blur, I don't really remember what I said.

Jackson was fascinated with the "On the Air" light. One of the DJ's told J he could ask for it to go on or off. J did and the DJ turned it on/off for him, but then J didn't stop and was yelling, "Turn the square light off!" during the interview. Randy took the boys out so I could finish talking.

They gave each of the boys a toy, Jameson got Buzz Lightyear and Jackson got a shape puzzle. The whole family got admission to the art museum. When the interview was over, we were sent upstairs to get a family picture taken. The photographer said that our picture might show up on a billboard someday. Yikes!

It was wonderful to see the other members of the Family Advisory Committee that came down to support us. Thank you!!

Some of the stories from other families I've listened to over the past few days have been heartbreaking. I'm amazed and inspired by the strength of families who have lost a child. Injuries, multiple surgeries, heart defects, cancer - I continue to remind myself no matter how hard some days get, how lucky Jackson truly is. He is defying every odd we were initially given. And much of that is due to the care and support we've gotten from the hospital staff.

Object du Jour: The shapes from the puzzle.

iPad and Miracle Marathon

When I dropped J off at school today, his teacher told me they'll be trying out an iPad in the classroom for the day. I know what we're going to be talking about for the next 3 months (at least).

On Friday morning, we'll be telling J's story on the WKLH Miracle Marathon for Children's Hospital. You can listen live at http://www.wklh.com/ Please donate if you can!

Object du Jour: The ABC book and a picture of a woman listening to a very old school radio. J has named it, "Listening to the iPod."

ETA: I picked J up at school and the whole way home he yelled from the backseat, "Go back to school!! See the iPad!!" So, I guess the practice run with iPad went well to say the least. I looked into them and they are about 500.00. A little bit pricey for us right now, but maybe they'll go down in price like the iPhone and iPods.

Ducks make fire drills

Eye clinic today. The booger is now 20/30 in the right eye and 20/40 in the left. I really think his scores (aside from the wandering eye) are mainly based on interest in the items on the screen. The orthoptist started with the apple. Nope, he's not gonna do it. He's gone so many times that he's now shouting out requests. "Square! Rectangle! Microwave! Freebird!"

He saw a laminated card with letters on it and she asked if J knows letters. I said yes, so she brought letters up on the screen. No problem. Got them all correct, but kept asking her to show him the X. So, now I don't need to worry if the date of the visit is a "feel like talkin' about apples day," we can go straight to letters.

When we were finished, the orthoptist said J could get a sticker and a Beanie Baby. She put a few on the counter for him to pick from, a duck, moose, elephant, lobster and bear. No interest, but he did ask if there was a microwave in the bucket of animals. I chose a duck because he's been very into hearing stories about ducks lately (One Duck Stuck by Phyllis Root, check it out - compelling reading). We get out into the lobby and I show him the duck. J tells me, "Ducks make fire drills." Just in case you were wondering where fire drills come from. He happily carried the duck to the car, until I strapped him in the seat and he says, "Want the elephant." *sigh*

The end result: get him to wear the glasses as much as possible. J has been better about wearing them at home and will put them on by himself. Often times, upside down, but progress is progress!

Today is "Hippie Day" at school. J is clad in jeans and a Summerfest tie-dyed shirt. It's the same shirt that causes people to think Jameson is a girl.

Object du Jour: A Yo Gabba Gabba toy video screen.

Syttende Mai, Earphones, First Naughty Note and My Soapbox.

Let's start with the fun stuff!

This past weekend we went to the Syttende Mai festival in Daddy's hometown. There's a parade, rides, craft fair, food and music. The parade part always concerns me for Jackson. He spent last year huddled under a blanket sobbing. This year, he watched every single second, commented on what he saw and talked about going back ASAP. The difference? The sound blocking earphones I bought a few months ago. They've been practicing wearing them at school, so when I first busted them out at the parade, J said, "Fire drill?"

New foods this past week include: Kettle Corn and bacon. J has been really rockin' the toast lately. Yay!

J came home from school yesterday with his first "naughty note." I guess at the band/chorus concert (which he thoroughly enjoyed while wearing the earphones, btw), he pulled a girl's hair. When the teacher told him not to do it, he did it again. Stinker! I read the note and had a little chat with him about being nice to our friends. He took it all in and turned to me and said, "Dot Com!" Glad he was listening and thinking about his behavior. The teacher said the girl wasn't upset, but hopefully, it won't happen again.

And now for the Soapbox portion of the program...Nothing bothers me more than to hear people refer to people with special needs as a special needs child or a Downs child or an autistic child. These kids are kids, first and foremost. You wouldn't say a cancer child or a heart defect child or chromosomal disordered child. Jackson is an adorable little boy who happens to have a diagnosis. The diagnosis does not define who he is as a person. I know I've posted something to this effect before, but it's worth repeating.

Object du Jour: The Yo Gabba Gabba pieces and parts.

Can I get a do-over?

This has been a really long week...

My car died at J's school and the custodian had to come out and give me a jump. He really was not happy to do so. I'm pretty sure I need a new battery.

Then, we finally go out and get a new gas grill. Menard's had an awesome one on sale. We pick it up, take it home, Randy starts putting it together and we realize, it's the wrong grill. Gah! He talks to the manager who said they can only take it back if it's fully assembled. So, poor Randy had to spend the evening fighting with a grill we weren't even going to keep. We have the right one now (which is still sitting in the box!)

Then, the water heater died. I'm never, ever going to take hot water for granted again. I had to boil water to wash dishes and we ended up giving the boys baths in the sink with boiled water. But, the new one is now in and working. I just had the best bath of my life!

Then, last night I notice that the cat bite on Jameson's calf from earlier in the week has a lovely 3" red ring around it. I called the ped last night who told me to bring him in today. Yep, infection city. Now he's got a 10 day course of augmentin. His first prescription ever. If it doesn't work or gets worse, we go back in. Word of warning: If you ever visit my house, do not make eye contact or even think about the cat. She's just kind enough to let us live here.

Then, I show up for my haircut this morning and my stylist tells me that I wasn't on the schedule for today. She was in the middle of another haircut when I got there. Seriously? It's on my Google calendar, which I live and breathe by. She said she saw me on a few days ago, but then it was gone and thought I had canceled. Nope, not me. She's so darn wonderful that the squeezed me in anyway. I adore her. If you live near me and need a stylist, drop me a note. She thinks what happened is someone with a similar name canceled and they took me off by mistake.
On a happy note: We'll be telling Jackson's story on the radio on the Children's Miracle Marathon for Children's Hospital at the end of the month. Very exciting!

Object du Jour: A plastic letter X, occasionally known as the "criss cross" and the Dr. Seuss ABC book. He's sleeping with both now.