Today Lucas had his first orthotics appointment for cranial band treatment for plagiocephaly. I walked in worried to begin with and I left terrified and in tears.
We have hit a hard road with my health and the closest location for treatment 45/60 minutes away. Appointments for the first month appear to be every week and then it goes to an every two week schedule.
I’ve exhausted myself trying to find resources to ensure the ability to get him to these appointments. With it, I hit dead ends.
The orthotist was very thorough explaining everything to me, including something I’ve never been told. “It’s crucial for him to get to every appointment because this ultimately becomes a risk of potential brain damage, or death.”
My heart dropped hearing these words. While everything I have researched says there’s little evidence, here I was in front of the best in Iowa. And he was giving me information no one has before.
Some of the facial deformities he said are likely to never go away. If the torticollis is not treated successfully, it will lead to cervical spine issues and issues with his ARM movement.
I am scared to death for my baby boy. I don’t know how I am going to transport but I have to.
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