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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I’m so sorry, Jenna! If I lived out that way, I’d totally help with the transportation. He’s such a cutie pie!! I’ll be keeping you and your family in my thoughts and prayers. ((HUGZ!!))
Oh my gosh, I had no idea he had this condition. I hope you find a way to get him to his treatments.
Do you need transportation to these appointments or gas money to get to them? I can help with some gas money for you, please let me know sweetie. HUGS.
Oh goodness, Jenna, I’m so sorry. Many prayers coming your way.
I dont understand what is going on exactly…is it something inside his head?
On my Facebook, I posted pictures from “bird’s eye” of his head. Because of the deformity and his neck condition, it has shifted his head. As he gets older and the bones fuse, it becomes permanent. His eyes have shifted if you look closely and there are other things you can’t see over camera I don’t think unless you look closely and pay attention to it. Ultimately, from what my husband and I understand, it can stunt the direction of brain growth (put too much pressure in one spot, not enough in another).
He is such a sweet pea Jenna! Hope everything falls into place. (((Hugs)))
Sorry to hear that you’ve reached such a point. I’m sure it was hard to come to terms with not being able to make the appointments but to hear this was likely a double shock. Are there any government or county programs you can take advantage of? I’m sure you researched this before but maybe the doctor can suggest something. *HUGS*
As of right now, the only thing available is a reimbursment program. They pay a certain cents per mile and from what I understand, up to two months to reimburse.
That’s rough. It was medical stuff that caused our financial hardship before. I really hope, for all your sakes, that you are able to get the treatment your son needs!