Miles is asleep- couldn't even make it to half time show. He missed the Boss rockin' out, though the fireworks were a bit over the top. Instead of sitting in awe with each brilliant burst, all I could think of were fire hazards and emergency exits. Had we been in Tampa, I might have had a panic attack. Football jerseys look highly flammable.
Friday are going to add another doctor to the deck. This will be our first trip to the developmental pediatrician. Seriously- don't all pediatricians deal with development?!? Regardless, this guy is supposed to be the state's top Down Syndrome doctor. We were lucky to have gotten an appointment so quickly- we've only been waiting two months. He'll work closely with Miles' geneticist. I wonder if she's already warned his office about me, that I am a high-strung parent. I actually made the summary report from his last visit:
We encourage mom should she find information that is worrisome to her as she does further research about isochromosome 21 to please get that information to us so we can clarify the information for her.
OUCH. I think they were trying to be helpful, but damn, it comes off a bit tough. (Never mind all of the grammatical mistakes. Run-on sentences, hello!) The visit was a good six months after our initial appointment, so naturally, I had many questions. And by many, I mean there were at least ten topics I needed covered. It's been difficult finding information, like longitudinal studies or research groups, that focus on translocation. Actually, I have found no groups that research specifically translocation. There's a strong DS group out of Emory who couldn't include us.
The only research I can find is related to leukemia, which is also structurally an isochromosome. With this in mind, yeah... sure... I was anxious at the appointment; I was tired of not having the answers to questions I hadn't even had the chance to ask. Furthermore, it was annoying how watered down the information given was- the genetic counselor was trying to explain what a karyotype is while I was asking, that since my husband and I tested negative as balanced carriers, is the translocation still identified as "Robertsonian." We weren't listened to, and that still has troubled me since. Thought I resolved my feelings about this appointment a long time ago- guess not.
As Friday's visit with the developmental pediatrician looms closer, I've been wondering if I need to do anything differently. Thinking that maybe I came across as pushy, or a know-it-all, or whatever- thinking that my awkward experience at the geneticist was my fault. And UGH, I am mad that my brain keeps trying to take on that burden.
What's my saving grace in all of this negative thinking? My son, my beautiful, strong, and glowing son. Mentioned well before my appearance in the report is a handful of hopeful information on Miles' progress. That's the truly important part of that letter, and I need to remember that!
Alright- sorry to vent on Super Bowl Sunday. Guess the game hasn't been exciting enough to distract me. Not even the ads- and that's saying a lot. At least Coach Tomlin and I share an alma mater. Tribe Pride, woo-hoo!
