Thursday, November 06, 2014

Guess what I do NOT want to practice?!

Answer: Waiting for answers. Or pretty much waiting for anything. I'm not good at waiting for anything and I'd like to stay exactly this way, thank you very much.

I'm sorry for the radio silence, but I was going through a mood in which I wasn't sure what to post.

Good things have happened: Halloween, new homeschool procedures that reduced my yelling by fully 84%, nice gigs with people I like, a brunch with a friend we made in China working for Holt.

Holt brunch!
There were 6 or 7 families with children from China there.
The kids all had a great time!
I like to start with a list of the good because then I don't feel like such a whining wussy writing about some of the rest.

The MRI results appear to be a bit murky. The doc at first said they were totally normal, but it took her a few days to get to us and by then I had googled several of the findings. It seemed to me to indicate possible surgery-requiring things (tethered cord, maybe a rare syndrome) and I asked her a bunch of questions about it. After letting me know she was all offended about that and nobody in her career had such questions, she apparently did ask somebody else about it and changed her recommendation to have us see a neurosurgeon. It turns out one possibility is that Primrose might need a spine surgery. Another is that she could need monitoring for masses that can become cancerous. A third is that none of those things are true and we didn't see aaaanything.

Best friends came to visit and fun was had by all.
My boys would like this kid right here to live next door, please.
Me too, except we can't wrench them away from stupid snobby coffee-smelling Seattle.
That doc was fantastic in person, and it's entirely possible we simply misunderstood each other. Still, the way it went down was oddly discouraging and a little frightening. If I hadn't pushed, then we would not know she needs a specialist's opinion. If we miss a tethered cord now, it can cause permanent neurological damage later.

I think I would be as intense an advocate for my boys if there were any question about medical things. I think I would... but this feels different. When we agreed to adopt our girl, I think we agreed to be fiercely involved with figuring out whatever she needs. One of the reasons we were allowed to adopt her is that our country has state of the art health care and trained doctors at the ready. It is a lot of pressure, and I'm disappointed that this first experience in mapping out her health involved me being a squeaky wheel already. I guess that's the way things are with a lot of modern medicine. I was hoping to have her all scanned, measured and tested, and then know what's going on in that cute little body once and for all. To passively receive the information from a team of super-with-it doctors... sigh.
This makes Toby look like that Gulliver visiting a lilliputian.
In reality, he visited a spinning toy on the playground and then went to lay down for a while.
As he tends to do...

Some of the things she might have are linked with genetic components and risk for them is inherited. I found a forum for one of the potential issues and it was full of moms who discovered they had this syndrome for the first time when it was diagnosed in their children. Others had their children tested in utero and were primed to check out their babies when they were born. We don't have the advantage of that kind of preparation, of knowing a single thing about what we're dealing with beyond what we've read on the internet. Both Jonathan and I grew up with medical parents (his dad is a fabulous Oncologist and my mom had a career as an OR specialty nurse), and neither of us are all that content with trusting the internet for these answers.
She has a monkey hat and she's not afraid to use it.
Notice she's set herself up here with a Pillow Pet, a book and her fashion accessories.
All a girl could want.
She's a happy kid. Happy is one of her current favorite English words (along with "quiet", "goggles", "apple" "food" and "bye") and she likes to wake up saying "HAPpy HAP!py HAP!!!pyyyyy", actually. She's a ridiculously awesome kid and is suffering not one iota. We just want to be sure to keep it that way and it's weighing heavy on me until we get some clear answers.

No comments:

Post a Comment

I love comments, don't you?