Thursday, December 11, 2008

In the midst of Christmas shopping and celebrations, Brady, Grandma and I went to Brady's cardiology appointment today. It was his follow-up echo from his cath last August. My favorite part of the whole day was a little girl walking around the waiting room with a tray in front of her, stopping at every single person and asking, "Would you like a cookie?" She then handed out an invisible cookie. I watched her walk around and every person played along with her -- I love when everyone comes together for a greater good.

And now for the reason why we were there: the short version of the story is that Brady will have heart surgery in February. The longer version is that ever since Brady was one month old, we knew surgery was in his future. His gradient keeps going up, and his cardiologist, Dr. Marx, was only waiting until he was older to have the surgery. He said that a few pounds difference isn't really going to matter, and he was waiting for that big sign to get this going -- which was his level going up again after a few months. Dr. Marx said that some other cardiologists would have probably already done the surgery, but he wanted to wait as long as possible. It is surgery that will --hopefully-- only be a one-time-thing.

The good news is that his cardiologist said that Brady will be fine for the surgery, he doesn't really have any worries for him. Dr. Marx is a very straight, honest man who doesn't say things just to make you feel better, so I feel very confident since he said that. The bad news (besides the obvious) is that we're looking at a seven to 10 day hospital stay -- ugh. Brady will take a few weeks to recuperate, but I'm already thinking of the pounds he'll probably lose after all our high-calorie work!

We should get a call over the next week or so to put the date on the calendar. I am feeling okay, as I trust his cardiologist and I see how well Brady is doing. One day at a time...

Wednesday, December 10, 2008

Meet me in St. Louis...

How exciting - the WSA convention in 2010 is in St. Louis - woo hoo!! We head out to St. Louis every few years to visit family - my family moved from there when I was eight. The last time I was there was when my Uncle Joe died in 2005 - so Brady already had his first trip to Missouri(although he was in utero!). (Uncle Joe is who Brady is named after --Brady Joseph.)

There's so much to do out there - Nance, you WILL love the Arch! - but there's also the Saint Louis Zoo (free and HUGE!), plus the downtown area and tons of other stuff. We will all have a blast!

Wednesday, December 03, 2008

21.8 lbs tonight!!

My Brady gained ONE POUND AND THREE OUNCES in one month!

Holy cheesecake, Batman!

And for all the high calorie food I am giving him, I have gained three pounds. What I do for my children :)

Monday, December 01, 2008


When I found out I was having Brady, I was excited for many reasons - but one of the biggest was knowing Michael would have a brother, a sibling. Even though they would be seven years apart, they would still have a connection and have a history like no friend can. I knew Brady would look up to Michael, and Michael would protect his younger brother.

And then we got the WS diagnosis when Brady was one month old. Again, I thought of Michael - was he being cheated out of a "normal" sibling relationship? It didn't seem fair, and there was nothing we could do about it. But after I read about WS, I realized Brady could still be the brother I had envisioned. Looking back now, I'm not sure what I thought would be the "right" sibling, but this was uncharted territory and I didn't know what the right answer was. So once again, my mind changed to what the "perfect" relationship would be.

However, I noticed that Brady's development was much slower than other WS kids. Even though all our WS friends were developing at different speeds, Brady was still further behind than everyone else. He wasn't crawling steadily until he was over two years old, still not walking over three. He vocalizes, but doesn't speak yet at three, either. What kind of relationship would my boys have?

Funny, if any other mother had come to me with these comments about her own sons, I could tell her that as brothers, her sons would have their own special bond, their own secret inside jokes, their own smiles for each other, regardless of ability. I could tell her that her older son would always protect her younger son, that her younger son would watch her older son constantly, waiting for the inevitable laugh. I would tell her that she would have incredible joy watching the two interact, knowing that their relationship wasn't tainted, wasn't anything different. Funny, I could tell another mother this, but until I sat right now and wrote it out, I couldn't tell myself.

I know Michael and Brady's relationship will grow and change, but I know that what I hoped would happened was achieved: the bonding of two boys that is inseparable.