Jack's Curvy Journey

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Because of the severity of his scoliosis, it causes him to pull to the
left and his head was flattened on that side. The difference in
measurements from the left side to the right side (diagonally from the
front to the back) is 10mm, meaning he has mild to moderate positional
plagiocephaly. It was recommended that he have a helmet to help the
shape, which he will wear 23 hours a day.

We have to return to the lab to have his head cast and his helmet made
some time next week. Today we left the house at 6AM to drive to
Kirkwood, then to the hospital in time for our radiology appointment,
and by 10 AM when his appointment was over, he was done. He fell
asleep before we were out of the parking garage. Since we have to
return this week some time (or next) to get his back brace fitted,
we'll just do the casting of his head then.

The helmet is rigid and will be measured around the fullest part of
his head. Essentially, as his head grows, the space that is now flat
will fill itself in. The chance of him having a total success in
helmeting is slimmer than that of a younger child because his bones
have started to harden, but we should be able to see some results.
He'll need to go to follow-up visits every two weeks for re-shaping
and re-positioning. They said the average length of time for
helmeting is 4 months.

This is also often not covered by insurance, despite the fact that
it's related to his scoliosis, because they don't feel that it
interferes with his functioning. I wish we new a good laywer. :) We
plan to appeal and appeal again, but will essentially have to pay for
it out of pocket and try to get the insurance to reimburse. The NP we
saw today said she's only seen one ever be approved and she thinks it
was an accident, since it was a set of twins and only one twin was
approved. In order to just have him casted is $500 down, so we're
hoping we can get something rolling with insurance because the payment
plan is ridiculous. It makes me so upset for the low income families
- they don't bother to tell you this until the end of the appointment,
and how easy is it for most families to just come up with $1500? It's
ridiculous. They should have some sort of disclosure when you call
for the intial appointment, when they know what insurance you have.
Such an unfair system.

We are increasingly concerned as the days pass, getting closer to the
MRI on Thursday. Jackson will be under general anesthesia for the
procedure and it is not without risk. Please continue to keep him in
your prayers and I will update more after the MRI on Thursday.