About a Week Ago

We were back in Dr. T’s office for Katie’s annual visit. We had done a lot of preparatory work with Katie for this visit. We had discussed things he might want to do. Things he might need her to do (e.g., have an x-ray taken), and we talked about how she could make it easier for herself and for everyone else (lie still and not fidget so they didn’t have to use a needle in her arm to help her stay still). We knew going in that the news wouldn’t be what any parent would hope for in this situation. We were not going to be told that the hole was closed and she was free to go. We all knew it. The last remaining hole is still there. So we were prepared for the worst.

What we got was both better and worse than we expected. Katie was Katie. She read herself a book while she waited for Dr. T to come in. She felt very sorry for the child in the other room who was screaming and wanted to go let the other kid know that Dr. T is awesome and he doesn’t need to be afraid, but we convinced her that she didn’t need to do that. They checked height, weight, and head circumference. Unsurprisingly, Katie has gained a pound since he saw her last year and approximately one inch. So the growth spurt we were all eagerly anticipating did not occur. Sigh.

When Dr. T came in, he asked if she could read. She looked at him like you’d expect — silly man, I could do that last year. Heck last year, she wrote her own list of requests. This year she didn’t come with any because she knew this was likely a take away appointment rather than a give to her appointment. He asked Katie how her head is and she was up front with him. I still have a hole right here, and she rubbed her fingers over the spot. He wooged her head (imagine someone else rubbing shampoo into your scalp, that’s kind of like what he does). He said it feels a little smaller, doesn’t it? Katie said she thought so, but she knew it wasn’t closed.

And then we started discussing. January or June. He first wanted to see her again in June 2016 so that if we have to do something we could do it after school let’s out and she would be all set to go when school restarts in August. When I reminded him that we homeschool so that’s irrelevant, then he said, well, then I guess we could go with January. And then he said, no, June. Let’s stick with June. And then the blow, whatever minimally invasive procedure might have been on the table for her is now off the table. If the hole doesn’t fill in she will need surgery.

I understand the reasoning. The minimally invasive procedure has an approximate 50% success rate and it takes a year to determine if it has been successful or not. If we did it now, that would be fine, but if we want to wait, doing full blown cranial surgery at age 8 1/2 is not ideal. It’s not ideal for multiple reasons, but the one that likely makes a difference is that it can destroy a girl’s self-image to have her scar revealed for the world to see and lose a substantial amount of hair. Especially for a girl who has been so patient and worked so hard to grow out her hair. Although, speaking of hair we have learned that the reason that Katie rejects buns so strenuously in dance is because setting one up (that will stay while she dances) pulls on her scar and hurts her.

The surgical procedure is deceptively simple. He will reopen the incision (as we now get to call it instead of the scar, since it may soon be an active part of her body again rather than a reminder of past events), peel back her skin and seed the whole with bone fragments from her and from the bone bank. While there, he also wants to shore up her temples because they are sinking, which they should not be doing. He’ll put a plate over the hole and hopefully the whole thing will heal up and grow and that will be the end of it.

Her restrictions remain the same, no sharp sticks, no soccer, and no body weight over her head (so no hanging upside down on the monkey bars for Katie — not that she would, she says the blood rushing to her head feeling hurts her scar, sigh). And now we have a ticking clock.

Katie sees this as a continuation of God’s plan for her. Whatever happens is what is supposed to happen so that other people can learn about her birth defect and learn how all the treatments work. She’s an amazing kid is our Katie. All she asks of all of you is that you lift her in prayer that God’s will be done with her head. So, if you’ve put her on your church’s prayer chain, leave her there. If you haven’t, please feel free to add her. She believes she has come as far as she has through prayer and the grace of God, and she believes that He will answer our prayers in the way that is best for Katie and her “ministry” (she sees my blogging about her head as a ministry for those who come behind her with trig).

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2 thoughts on “About a Week Ago

  1. What a kind heart your girl has. I am so sorry for this news and for your wait. We watch our daughter’s slow hair and physical growth too. It’s heart-wrenching, but out of our hands.

    You and your family are always in my prayers.

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