So tonight, we introduced Drew to the tenets of Hide and Go Seek. Drew counted to ten thusly:
"Ten, Eleven, Four, Six...ready or not, here I come!" and tore off in search of Lee. A minute later, I heard him say this: "Babe. You're killing me." when he couldn't find Lee.
Oh, sweet Lord. I wouldn't say he's the funniest child, because they are all funny. But he is so far winning in the funniest child of mine list.
Monday, October 26, 2009
Monday, October 12, 2009
Connor and tests
Part of being Connor's mom is getting him to and through a lot of tests. Today he is having an EEG, a brain-wave test. He has had a lot of these, starting in April 2004 to diagnose his condition. So I'm sitting here on a guerney with him and remembering all the tests. EEGs, EKGs, spinal tap, MRIs, x-rays, blood tests. He's only 5, but he's been through a battery. And he's fantastic during them. A total trooper. Of course, numerous tests happened when he was still very, very small so he slept right through them, but since then...trooper.
In case you haven't had one (and I hope you haven't had cause) an EEG consists of 26 electrodes being adhered to your skin all over your head (and one on your heart) using a waxy substance to make them stick and conduct the electric patterns. Then, your head is wrapped with gauze like a mummy, so that the electrodes don't slip around. Connor does not like things on his head. We may not understand a lot of his likes and dislikes, but this one is quite apparent. He DOES NOT like things on his head. But one they are on, he drifted off to sleep and they recorded how his brain was operating. Each time I try to go in with controlled expectations. Every time a small part of me fails in that, and I go in with "he's healed?" expectations. Now I have to wait until Election Day to find out how it was, and what that means for his medications, and his quality of life.
For those who didn't know him then, the spinal tap was the worst. He was six weeks old, and he was so resistant to the test that first, he ripped out the IV they'd put in, then he held his breath. His oxygen levels dropped, and all hell broke loose in the ER. Once we knew he was all right (at that time - it was pre-diagnosis) it was funny. Of course, before we knew he was all right, it was an agonizing 20 minutes of hallway waiting.
I hope my guy doesn't have to do too many more tests, but the reality is that he will need maintenance EEGs for the foreseeable future. But you know what? He's still fantastic, and each EEG has been better than the previous one. We're still looking forward to a 100% clear EEG, and from what I've been told we are pretty close. I wonder how much closer this one is.
In case you haven't had one (and I hope you haven't had cause) an EEG consists of 26 electrodes being adhered to your skin all over your head (and one on your heart) using a waxy substance to make them stick and conduct the electric patterns. Then, your head is wrapped with gauze like a mummy, so that the electrodes don't slip around. Connor does not like things on his head. We may not understand a lot of his likes and dislikes, but this one is quite apparent. He DOES NOT like things on his head. But one they are on, he drifted off to sleep and they recorded how his brain was operating. Each time I try to go in with controlled expectations. Every time a small part of me fails in that, and I go in with "he's healed?" expectations. Now I have to wait until Election Day to find out how it was, and what that means for his medications, and his quality of life.
For those who didn't know him then, the spinal tap was the worst. He was six weeks old, and he was so resistant to the test that first, he ripped out the IV they'd put in, then he held his breath. His oxygen levels dropped, and all hell broke loose in the ER. Once we knew he was all right (at that time - it was pre-diagnosis) it was funny. Of course, before we knew he was all right, it was an agonizing 20 minutes of hallway waiting.
I hope my guy doesn't have to do too many more tests, but the reality is that he will need maintenance EEGs for the foreseeable future. But you know what? He's still fantastic, and each EEG has been better than the previous one. We're still looking forward to a 100% clear EEG, and from what I've been told we are pretty close. I wonder how much closer this one is.
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