Where she is now . . .

people who follow me on Twitter know that Katie had her big evaluation appointment for the year today. I was a nervous wreck, big surprise. She was fine. She was able to look at the fish and talk about them and all that. In what I consider one of the all time smart moves by a doctor, Dr. R hid out where she couldn’t see him but he could hear her and was able to determine (as we keep saying) that her cognitive processes are spot on. She’s a very smart little girl.

She walked right past him with no fear whatsoever and was digging in the toy box when he came in. When she spotted him, she curled in on herself and started to cry. She tried to shrink herself up so that she couldn’t be seen and fought being picked up tooth and nail. P is particularly grateful that I trimmed her fingernails before we went :). She screamed to beat the band while Dr. R felt around on her head. His physical exam took all of two minutes maybe.

The assessment: no significant growth in the bones, but she’s also very small for her age and he thinks the two may be related. He said that about 50% of kids show no significant growth at the 1 year mark (which is where Katie is) and 50% do. So, Katie is in the not showing group. He said that he isn’t worried and that because she’s so small, when her birthday is, and the fact that we’re homeschooling, he’s willing to give her more time than they usually do to fill in those defects (for those joining the party late, when they reconstructed her skull they had to leave intentional defects in it in order to make all the pieces fit together; the ideal solution is that the bones knit together on their own and the defects heal, this is what we’re talking about when we talk about bone growth). So, instead of her drop-dead point being age five, she gets until she’s six. What this means, she has an extra year to fill in those defects before we have to explore a second surgery.

He’s not concerned yet about the sensitivities that she shows. He said, in all honesty, this is the neurosurgeon’s area, but he’s seen this before and by the time they’re three (or, alternatively, by the time they have their big neuro follow up, um, at three) they’ve outgrown it. Again, he made the point that because of homeschooling, it’s not as huge an issue if it is sensory processing disorder. He agreed that accommodating her and working with her are the best things we can do for now (and also, he agreed that having an OT for a sister is probably a good thing if we need ideas for helping her unofficially).

He gave us the reassurance we were looking for. She can do all the things any other little girl can. We might want to avoid having her hang upside down and dropping her on her head (because I know so many parents do this on a regular basis), but she can start learning how to ride a tricycle (thank you Aunt S), she can swing on the swings and use the slide. She can take dance classes and swimming lessons and so forth. She probably shouldn’t take gymnastics (the hanging upside down thing), but otherwise, she can do anything she wants to do.

He said the main thing to watch for now is for her head bothering her. Essentially, if she complains about an intense headache that can’t be eased by Advil or if there is sudden swelling or extreme prominence of some of the materials that are holding her head together, then call him (or the neurosurgeon) immediately. Otherwise, he’ll see us when she’s four.

I can live with that. I absolutely can. And so can she!

Also, yay homeschooling for getting her that extra year!