Two weeks in

So far so good on the helmet. Tonight when we gave her a bath we could see a big difference in the symmetry of her forehead. The photo below shows that she's getting rounder by the day!

We have a helmet!

At the end of the week last week, Dr. Taylor helped us out with our insurance company by talking to one of their medical review people. After a conversation with him, the insurance folks reversed their decision and decided to cover the orthotic device. Dr. Taylor got in touch with me by email, sending me a message that said simply, "Helmet approved." It was the greatest, shortest message I think I have ever received by email!

So, we headed back to Syracuse today in some seriously inclement weather to meet with Ramona, the orthotics tech at Hanger. She put the freshly manufactured helmet on Leah's head and drew several circles around the edges, then took it off and disappeared down the hall to carve it up a bit for a better fit. She came back and repeated the process a few times, and each time she put the helmet on Leah's head, Leah reacted mostly with surprise rather than displeasure. After Ramona was happy with the fit, she had me put the helmet on Leah's head, and while it's not difficult, the stiffness of the helmet and the importance of lining it up correctly on her head make it a bit tricky. There's an arrow in the middle that points to the center of the helmet and that arrow is supposed to line up with Leah's nose, so that helps a bit in making sure it's lined up correctly. Here are a few photos:

(I know this above photo makes it look like we have the helmet on crooked, 

but rest assured that's a camera angle thing...)

For the next few days, we follow a schedule of putting it on and taking it off to get her used to the helmet. We start with one hour on and one hour off today, then two on and one off tomorrow. On Friday, she will wear it for four hours then take a one hour break, then wear it for four more, though she won't wear it for naps or while she sleeps at night. On Saturday, it's six hours including naps, and on Sunday she sleeps with it on at night for the first time. By the time we go back to see Ramona next Wednesday, she will have it on for 23 hours a day, and we will just remove it in the evening to give her a bath and to clean the helmet.

After a two-plus hour drive home on ridiculously snowy and slippery roads from Syracuse, we put Leah down for a nap, and then put the helmet on her for an hour this evening. She tolerated it well, though got grouchy at the end. When we took it off we were both surprised at how sweaty she was, so we gave her a bath while we followed the directions on cleaning the helmet. If she's going to be that sweaty each time she wears it, we are going to have to give her a lot of extra water, I guess, and break out those short-sleeved spring clothes a bit earlier than planned.

Our insurance covers the device for 90 days. Hopefully, that's as long as she will need it. If we need to have her in the helmet longer, we will have to revisit the whole coverage issue again, and a new helmet will need to be made, but we aren't going to even think about that right now. Like every step in this whole process, we're just going to keep taking it one day at a time!

A Hold on the Helmet

Today was the day we were supposed to get Leah's helmet, but a denial by the insurance company has put a stop to those plans. Hopefully, it's just a delay. Apparently, their policy is to cover the helmet only in cases of severe non-synostotic plagiocephaly. That means that Leah's cranial vault asymmetry would need to be greater than 12 mm, or her asymmetry index would need to be greater than or equal to 8.75%. I know her asymmetry is 6mm, and while I am not sure of her index, I assume it's less than 8.75% at this point as well. Our cranial orthotic tech has suggested we involve Dr. Taylor, so we are asking him to schedule a "peer to peer" discussion with the folks at Blue Cross. Perhaps if he can convince them that the helmet is the last step in the whole procedure and is therefore necessary, they will reverse their decision.

In the meantime, we have an appointment set for next Wednesday, and will just plan to pay cash for the helmet (which...yikes..is not cheap!), then hope that the insurance company will still come around and the helmet company can reimburse us for some of the cost.

Here's another before and after photo of Leah that I took today (the before is on the left, the one taken this morning is on the right). Hopefully we will get the helmet and will have an even better series of before and after shots to post in about three months!