Here's a quick recap of the weekend's events. Just like on SNL. Only not as funny. :)
Drew's blood test on Friday morning went better than we could have hoped for. This time I placed the prizes that Grandma sent in a bag on the desk during the stick. Then, when he first got poked and he was starting to cry and say ouch, I pulled out the first prize, a dinosaur that makes noise. It really distracted him and he forgot about the needle for a while. But then he looked back at his arm and started to get upset again and I pulled out the second prize, glow in the dark dinosaurs, and they worked like a charm until we were done. Good job Drew! He picked out a sticker for himself that said "Brave Hero" and one for Ava too. And he did mention that it was Ava's turn for a blood test again.
As a reward for being so brave during his blood test we decided to go to the park. I packed up the sand toys and lots of snacks that morning so we were all set. The kids had fun playing in the sandbox and climbing on the structures and watching the ducks, geese, turtles and squirrels.
I already shared that dramatic story, so we can skip it here. But I will try to make more progress in this area this week.
I had a birthday party for a friend at a country line dancing place. It was a lot of fun. We learned the Hawaiian Shuffle, the Cowgirl Twist, Cotton Eye Joe and one other one that I forgot the name of. And they had 25 cent beer! Dan and I also attended an engagement party for another friend and it was very sweet. Lots of yummy food, beautiful backyard and very touching toasts.
I got to watch Baby Chloe while her parents were busy moving into their new house on Saturday. It was so easy having three kids! I told Dan I was ready for the next one and he was bummed. He thought this day would be more difficult and I would see that three is too much to handle. But Chloe is a really easy baby and I'm no fool. I know that every day wouldn't be that easy and it would be much more difficult if I was trying to get three kids out of the house on a time schedule. So this matter is still up for discussion.
Immediately after church on Sunday we had a family meeting for parents of kids affected by Chromosome 22q11.2 Deletion Syndrome (that is the technical name for DiGeorge Syndrome) at the MIND Institute at UC Davis. There is a researcher there who is doing research on the brain differences and learning differences in kids with 22q. I went last year by myself and it was pretty depressing. It was the first time I heard that these kids are predisposed to mental illness, including schizophrenia. So I had Dan come with me this time. There were four talks. One on Medical & Behavioral Issues, one on Intervention Resources for Learning Difficulties, Executive Dysfunction and Emotional Concerns, one on Temperment and Mental Disorders, and one on the research that's been done and on what is being started.
The part that concerned me most was why these kids are prone to mental illness. While some of the reason is related to their different brain development, a big part of it is due to having illnesses. The sick role is a phenomena that affects the entire family, not just the sick child. And traumatic surgeries increase anxiety and PTSD in these kids. That just makes me sad. Because even though everyone tells me that Drew won't remember his heart surgeries, this proves that it does still affect him in a significant way. And there isn't anything I can do about it, because when you need heart surgery to stay alive, it doesn't matter what the other risks might be.
Other disturbing statistics include:
57% of kids with 22q will develop some type of mental illness
30-50% will develop ADHD
up to 60% will experience anxiety
25% will be affected by schizophrenia
While those numbers scare me a lot, the researcher did point out that you don't have to worry about what the future holds. He said just deal with today, and if something comes up deal with it then. That's easier to do when your child is perfectly healthy, but I see his point. I think it would be helpful to know what the risk of all those things are in the general population, just for comparison. Anyway, for anyone who is interested, they will be posting all the slides and the video from the meeting on their website within the next week or so.