how did it go? Those of you who know me on Facebook or in real life, know that today was Katie’s big neuro follow up for the year. They check for bone growth, assess for interventions, etc.
So, the good news we got there on time and even though P forgot which building they’re in now, we still made it with plenty of time to spare.
As attested to by the fact that Katie had an opportunity to check out Dr. T’s cool toys.
Our favorite PA was not there (good from Katie’s perspective), and she did step on the scale, allow them to measure her height, and measure her head. We made the nurse-practitioner promise that she would never tell the PA how easy a time Katie gave her.
Dr. T came in. He wooged her head. He’s pleased with the top. It’s clearly filling in and she’s not in any danger from that area anymore. Then he felt the sides. And that’s where the good news stopped flowing. She has no significant bone growth on either side. At all. We are now three years out from the surgery and she is now in the very bottom percentile. At this point, something like 90% of kids are showing some growth, so none is serious setback. At this point, all we can do is pray and hope that God’s time coincides with Dr. T’s time so that by this time next year she *is* showing enough growth to delay intervention. He swears he won’t have to shave her head and that the process is not nearly so invasive, BUT it is a series of procedures and we’re hoping to avoid having her go through more procedures.
There is more good news, though. Katie, after some whispering, managed to ask her important questions.
Katie: Can I ride a scooter with a helmet?
Dr. T: And wrist guards, yes. (Turns out Dr. T’s son broke his wrist on a scooter, thus the wrist guard requirement)
Katie: Can I play soccer?
Dr. T: With other kids your age, yes.
Katie: Can I go to Sunday school?
Dr. T: Yes, as long as we tell them not to use ice picks on your head (I would like to know what church he goes to)
Katie: Can I play on the big kid side at the Y play center? (This required visuals acquired thanks to a good friend who was there last night and texted them to me)
Dr. T: (studies the pictures for a minute) Yes. It’s all padded, she’ll be fine.
Basically, the only thing he wants her to avoid, aside from ice picks, is tumbling. Just on principle. The top is healed enough now that if she takes a hit to the top we should not wig out any more than we would if Ben hit the top of his head. He said at this point, and with where the bones aren’t growing it would take a freak accident, with a pointy object (hence the ice pick comment), to cause her serious damage. We’re to use our common sense and let her be a “normal” four year old girl.
He thinks her balance and coordination seem a bit better (thank you, Judy’s Dance Academy). Her sensitivity to textures and sounds and such are in the “normal” range for kids with her condition, so he doesn’t feel intervention is necessary. He did comment that she is very small for her age, so that is something on our side. One good growth spurt could start the process of bone growth on the side.
And he’ll see us next year.
All of this is to say, if you had Katie on a prayer chain, please keep her on it. If you didn’t have her on a prayer chain, please feel free to add her. This will all happen in God’s timing, and I hope that I can be patient and remember that through the coming year.
Thank you for the update. Here’s praying that next year, the only requirement left is “no icepicks.”
“So, the baby had her surgery?”
“Yes, and she did really well.”
“So, you’re all done for now. She’s better, right?”
Here’s to living in this moment where your beautiful girl has a year without surgical intervention. And here’s to our hope that this year’s stay of intervention stretches into the rest of a long, happy life.
Love from us.
Okay, you’re as good as I am at research. Can you find ANYTHING that describes what they do if they have to fill in the holes? I know, I’m going to make myself bat shit crazy, but I need to know.
what momsomniac said! xoxoxo
Will definitely keep her in our prayers. Also, ditto on the wrist guards: my oldest broke her arm twice last year (in the same place), both from “outstretched hand” accidents. Neither involved a scooter, but there will be wrist guards when we learn to ride on two wheels this year, for sure!