DOC Band Update

Cora has been in her DOC band for 4 weeks now. And, they are NOT satisfied with her progress (or actually lack of progress) so far. Now, her case was not as severe as others, but she still needed LOTS of remolding.

When we first got the band on, we were told that because she was not a severe case, and the fact that she is young, that the band would be on for about 8 weeks, but possibly as long as 12 weeks. Fine, I was prepared for that.

Well, her head is growing each week - YAY!, but it is almost like it is growing in the same shape as before the band. Huh? What? Yup, that is right. Her ears have not moved at all, her flat spot is still as flat as it was before, and her facial asymmetry is still as noticeable.

She has made some improvements though - the huge bulging bone in the back of her head is less apparent, and um....that is it.

It is really frustrating. Now they are telling me that she will probably be in the band until 12 weeks, that is IF there is enough room in the band 8 weeks from now. You see - the outer shell of the band is plastic. But, the inner part is hard(ish) foam. The foam is shaved a little each week, based on growth. After a while, there is just no more foam to shave, as you hit the outer plastic.

They told me that her head is not reshaping the way they predicted. Our clinician even got her supervisor to look at her head. They even asked if Cora wears it all the time like she should. Well, not only does she wear it for the 23 hours a day - but, I do not let her lay down at all during her one hour off. She is always in her jumper, on my lap, etc. The only thing her head is touching it the air. In my head, I think if I lay her down, it might cause her head to flatten again. Yes, in that one hour LOL.

They then told me that it is possible that after 12 weeks, she would fall into the 1% that they recommend a second band. Well, news flash - we can hardly afford this band. We CAN NOT afford a second band. So, whatever he head looks like at the end of treatment, is what her head will look like for life. Pigtails might be a little uneven, but whatever. Besides - once she has some hair - the deformity might not look at bad. Like I said, her head is not even close to being in the "severe" category.

Don't get me wrong - it is not like I WANT her head to look all wonky. And, if her case was severe, I would do something about it at the end of treatment.

On similar topic. Cora has been doing great in PT. She has been in PT for about 7 weeks now and we can really see a difference. She still tilts to the left, but at least now her ear in not tucked into the collar of her shirt. I really need to take some current head tilt pics so you can see the improvement.