Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Friday, June 29, 2007

An Amazing 11 years

A couple of weeks ago (June 6th) Angela turned 11 years old. It's been a scary, eventful, amazing, life-changing, glorious 11 years. I made a little video to remember them by.

Saturday, June 16, 2007

Wow! It's been awhile since I updated

So what do we know? NOTHING!!!!

The Neurosurgeon at Mayo thinks there are two possibilities. 1) she's having some type of seizure activity that we just didn't catch on her 24 hour EEG. This would make sense considering when we notice problems with speech and motor skills she's also very irritable and tired. BUT...these can last from 15 minutes to a couple of weeks, which is NOT typical of seizure activity. Or 2) that she has a generalized right-brain dysfunction. This would also make sense given the duration of the events. The problem with this posibility is we'll probably never know the why/where/how/ of it, because, in the words of the neurosurgeon, "We know a lot about the brain, but we don't know it all yet. There are lots of things we still don't understand."

Angela is supposed to be going in for a 3 day in-patient EEG at the end of the month, but I think I'm going to have to reschedule it. Shouldn't be too much of a problem.

Angela was approved for Make A Wish! Yep, all the paperwork went through, and the wish grantors assigned to her are coming to the house on the 27th to talk to her about her wish. Her answers vary depending upon the moment that you ask. If we ask "What do you wish for?" She might say, "to be an astronaut!" or "Go to Hawaii!" or "Go fishing with Uncle Jeff!" or "A cherry ice cream cone!" or, "Give Zach and Cody a hug!" (these are characters on a TV show she watches.)

The Zach and Cody theme has been around a long time. They are from the show "The Suite Life of Zach and Cody" on the Disney Channel. On the show, the twins live in an upscale hotel and get into all kinds of trouble as most tweenagers do. Last year when Angela and I went to Atlanta for the national DS conference, as we walked into the hotel she got all excited and could barely contain herself. "Yes!!!! Zach and Cody are HERE!!!!" It took a lot of convincining for her to understand that Zach and Cody were not going to appear around any corner in the hotel. Actually, I don't know that she was every convinced.

Over the past year Zach and Cody have been an intregal part of her pretend play. They party here every afternoon, they eat dinner with us, ride with us in the car. When we go shopping I have to say, "Now Zach and Cody...I'm sorry but you can't come into Target with us, because there are no invisible people allowed in the store. You'll have to wait in the car, ok?" I then remind Angela that talking to invisible people in public places probably isn't the best idea, but that I'm sure they'll wait patiently for her in the car while we get our things done. She then spends our time shopping talking to herself, "Zach and Cody are in the car. Yep....waiting for me. Yep....Zach and Cody....be patient...wait patient." (I wonder if she's telling THEM be patient, or herself?)

So last week when the Make a Wish person called me, she asked if I had any idea what Angela might like to do for her wish. I told her that meeting Zach and Cody would be a pretty safe bet! Oh, and by the way, they film at Disneyland in CA. Looks like that's probably where we'll be going if she gets a travel wish granted.