2 hours ago
Wednesday, April 4, 2012
I'm really behind on what I've wanted to update about the helmet. This post should have been three different posts but I'm going to try to give you the shortest version I can, and get it all in here.
Here's what I wrote last week and never got posted...
Lately we've been going to the orthotist about every 2-3 weeks for adjustments. Last week (actually the week before last since this is now outdated) we had to schedule an extra appointment for an adjustment, and upon measuring Hazel's head we learned she had a little growth spurt. That must be continuing because we're going to have to go back in tomorrow too (Friday, March 30th), and probably again next week. It appears she will grow out of this helmet soon, but we need to determine if treatment will be done when she does, or if we need to get a new helmet. Either way I'd really like to make it at least through the end of April. So hopefully we can do that with the current helmet and be done. I don't want to quit on it too soon because I'd like to make all the progress we can, plus there is the chance of her head starting to regress back to the old shape. Hopefully she's mobile enough now and not favoring the one side anymore so this won't be an issue.
The current shape of Hazel’s head (and face) is looking really good. In the beginning I could see obvious change each 24 hours when I took the helmet off to wash it. It was amazing! And now, even though the changes are much more gradual, I can still see how different areas are improving from week to week. Her head is not perfect, it may never be, but I just want to make sure we give the helmet enough time to do all it can do. So if the treatment is over when she grows out of this one, I really want to make it last as long as we can. After all we've done thus far, we want to make the most of it.
Now here's what happened when we went to the orthotist this past Friday, the 30th, which I referred to above...
Hazel has grown out of the helmet. I was not prepared for the orthotist to tell me this on Friday, but there wasn't anything more that could be done to make room. This is also when I learned that if we aren't ready to be done, we basically start over and pay another $2,000 for a new helmet. That came as a shock to me because Hazel grew out of this helmet in 2 months, whereas the plastic surgeon had prescribed it for at least 3 months, which is the shortest amount I've heard of a baby wearing a helmet, so how do others do it when they have to wear it for 6 months? And babies are supposed to grow, right? I can understand having to pay more to get a subsequent helmet, but I was not prepared to pay another $2,000 as though we're starting over. Hazel's head shape is good enough that we likely won't do that at this point, but it is a little disheartening to quit on it when we weren't really finished. And hearing the orthotist say, "It is what it is," isn't all that encouraging.
Now here's what happened when the lead physical therapist came to check things out yesterday, and when I talked to the plastic surgeon’s nurse at Children’s Mercy.
The physical therapist came today to talk and take a look at Hazel now that she is helmetless. When she took measurements of Hazel's head at the beginning of all this, the degree of deformation (in certain areas) fell in the severe category. (We are fortunate that there was always minimal deformation - I can't think of a better word - of her facial features.) Today when she did those same measurements, Hazel fell in the minimal category, which is a huge improvement. And her facial features are completely normal. The PT and I can still see some areas that could be improved on the back of her head, but likely no one else would notice. Hazel didn't fall into the normal category, but there may be a lot of people whose heads don’t qualify as “normal” and no one would ever know it. Hazel has made great progress in a shorter amount of time than average and we can be very happy about that. I have already had several people, who hadn't seen her without helmet since the beginning of the process, tell me they can see a big improvement. The physical therapist confirmed that it's likely okay to be done with the helmet therapy and we'll do our best to prevent any regression before Hazel's skull completely hardens. So maybe it really "is what it is," and I just need to be more positive.
I also talked to the plastic surgeon's nurse and told her about our experience from beginning to end, and she's going to talk with the doctor to get his feedback. We may still have to meet with him to get the final word/recommendation, but we'll see what they say when they call me back later this week.
The bottom line for me at this point is that the physical therapist is very experienced, very honest and straightforward, a real go-getter, and is the supreme advocate for each child and family that she works with, so I believe in what she says. So all of her positive remarks were encouraging and reassuring that we can be satisfied and likely move on and put this behind us.