Blood Test
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.
McKinley Park
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.
Insurance
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.
Parties
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.
Babysitting
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.
22q Meeting
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.
6 comments:
What a busy weekend. I can see how you can feel like you are on a roller coaster ride with all the ups and downs- but I was happpy to see that there was a lot of positive mixed into to it all. You are such a great mom, and we are all so proud of how strong you are in dealing with everything. I was especially excited to see that there is talks of a #3- YAY! Tell Dan we all know you could TOTALLY handle 3 adorable little Himmelbergers :)
Thanks for the long update. You have a lot going on (and I thought my life was busy!)
On the mental illness thing, I was told that some of those statistics apply to all kids with CHDs. I read a study on ADHD and CHDs and apparently kids with CHDs have a 30-50% chance of being diagnosed with ADHD during school years.
The study I read found it was correlated with length of stay in ICU which may have affected brain development but there was another theory that since the brain develops at the same time as the heart (in first 8 weeks) an interruption in the process at that time may have affected brain structures in a subtle way as well. The old thinking was that heart surgery in itself (eg bypass) could cause developmental issues. Now, they think it is broader.
I think the researcher was right about taking things as they come. I hope I can follow that wisdom. Meanwhile, I am just making sure Wren does not watch any television :)
Take it one day at a time, that is all you can do! One of my favorite quotes is: Don't miss the magic of the moment by focusing on what is to come.
Way to go on being so brave, Drew! Your dinosaurs sound so cool!
Matthew 6:34 "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."
Psalm 91:1-2 "He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the LORD, "He is my refuge and my fortress, my God, in whom I trust."
When I was reading your post, these scriptures came into my head. Hope they can be encouraging! Amy
Okay...you are SO BUSY!!! I cannot believe all you did this past weekend! I will tell you what...adding the third to the equation is not all that much more difficult...because the older two help so much! Noah and Leah take such good care of Micah...I can only imagine how beautiful a third child of yours would be...the first two are GORGEOUS!!!
That conference sounded both informative and scary. I hear you when you say that it is easier said than done when they are talking about the things that "might" happen...One thing to remember is that a great deal of our personality and the way that we respond to life in general is based on how our parents and loved ones treat us as a child...so...you treat those children with so much love and respect, and they will know this and they will grow with those traits in them as well...(does that make any sense at all? basically...you are a great mom so your kids will be at a real advantage because of all that you give them).
Okay, it is obviously too early in the morning for me, so I will stop rambling...have a great remainder of the week.
Heart Hugs,
Samantha
I hear ya on the mental illness thing. Here's what I tell myself to try and keep that worry at bay:
If I had 100 babies and 57 of them were going to have a major psychiatric illness, that would be very overwhelming. But I only have one Ramona, and she may or may not. The best I can do is educate myself on what to look for and then address things as they come up. That's all God expects from me.
Sometimes this thinking helps, sometimes not. Thinking about you...
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