If you can believe it, Amelia will be 4 months old on the 28th. Which, holy shit, where the fcuk did time go? I guess the constant sleep deprivation which is constantly making me wonder what season it is again as I put on my gardening gloves is making me a wee bit spacey. Or perhaps I am just stupid. Doesn’t matter.
Today marks Visit 2 from the Home Heath Nurse. When we were in the NICU, Amelia’s diagnosis was flagged. Bolded, red flagged, signed, sealed and delivered. It seems as though every single department of the state knows about her encephalocele and I imagine when I go in for my driver’s license renewal in a (blessed) couple of years, I think the clerk will say “Oh YOUR daughter has the encephalocele!” If that gets me a better spot in the (wrong) line, well, then that will be the bright spot in this whole mess.
Developmentally, though, my daughter seems fine. I had a number of people tell me that the synapses in wee brain’s can regenerate much better than those of adults (which, yeah, duh, look at me. Obviously my synapses are dying left and right. Some might say it’s a direct result of my three kids and I would heartily agree).
It’s really easy to forget how serious her diagnosis was until I look at things like this:
Forgive the terrible quality of this picture. It was taken right before Amelia was taken back to surgery and right after the nurse had come in with a gown designed for probably a three or four year old. She apologized, saying that this was the smallest gown they had. Which really bothered me more than it should have.
And then I look at this:
I don’t have many pictures of Amelia’s encephalocele because I couldn’t bear to look at it without taking a couple of Xanax beforehand. But you can see the area where her brain was hanging out of her head pretty well on this handy MRI that I was given copies of.
Which. Yeah. Wigged me out. I don’t relish looking at spirally sections of my kids’ brain. As my mother would say, “I don’t know why NOT.” She’s a pistol, my mother.
This is what it looks like today, although the picture makes it look more muted and subdued than it is in the flesh. It’s VERY red and incredibly angry looking. I find that fitting.
She’s just like any other baby.
The nurse was concerned by my daughter’s inability to travel in the car. See, now, both of my boys were assholes in the car, but as babies they were Assholes Period, so it didn’t make a difference what we were doing. Driving illicited the same unpleasant response as breathing.
Amelia, however, is an excellent baby. Sure, she has a temper and admirable lung strength (in addition to an iron clad will), but the times she spends honking each day is measured in minutes, not hours. Unless, of course, we go in the car.
The minute we start moving in the car, she screams. And I don’t mean some pansy-ass little whimpers, I mean full-on hollering. Like she’s in horrible pain. Having seen my daughter in incredible pain before, I know the sound. The swing we have moves her from side-to-side and doesn’t bother her, and we don’t do the stroller because I don’t know why we don’t. My kids all seem to hate the stroller.
(For someone who had her brain sliced and diced, she’s an awfully big crybaby when it comes to shots)
See, her encephalocele was in the parietal lobe of her brain, and among other things…
(hear that? That’s the sound of a zillion bored readers clicking away from here)
…it controls proprioception, which is a fancy word for the feeling of her body in space. No, not OUTER space, but the feeling that tells you, “Hey, you’re standing up” or alternately, “Hey, you’re NOT standing up.”
If your eyeballs just fuzed shut in boredom, I am sincerely sorry.
So it would make sense that the backwards movement in the car would bother her. We’ve been desperate enough to buy different car seats to try and see if that was the problem, we’ve driven quickly, we’ve driven slowly, nothing seems to help. Which means that we’re not effectively shut-in’s just as we’ve gotten Alex okay with the car. Figures.
But the nurse, she was concerned. Not about my shut-in status, because I’m pretty sure she’s here for my daughter and not for me. Unless, of course, she saw that I was turning my cats into bonsai kitties or building a shrine to Britney Spears (note to self: hide Britney shrine). Then I imagine she would be highly concerned.
So, it looks like it’s likely back to the neurologist with us. While this in and of itself isn’t a huge deal–save for the fact that he is an asshole and will probably make me cry –it’s discouraging and it’s a reminder that maybe we didn’t skate by problems as easily as we’d thought.
I don’t really have a clever or witty end to this post so I’ll distract you…
LOOK, A CUTE BABY PICTURE!!