Wednesday, February 8, 2012

Plagiocephaly/Torticollis/Brachycephaly ... Food Please

These 3 words have haunted me for the last couple of weeks.  They have been the reason for my wanting to eat everything in sight.   They have been the reason I want to sit down and cry every night.  They continue to be why everyday is a struggle against food right now.  I need comfort.  I need a hug.  I need to somehow make things better.  I don't seem to have my mind around all that has been going on.  I have wanted to drown myself in cookies, cupcakes, cheesy pizza, crunchy salted chips, and pretty much anything else I could get my hands on.  Instead of doing anything harmful to myself (which, let's face it, eating like I want to would be), I have been picking up my little boys and hugging and kissing them, going for walks, exercising, watching as much junk reality tv as I can, and reading.  

"J" has Plagiocephaly and Toricollis.  "E" has Brachycephaly.  Both are results from their head position beginning in utero and continuing on to how they have slept in the first few months of their sweet little lives.  It is very common among multiple births, especially boys.  Please take a second and click on the links I provided.  They provide just some general information about each disorder.  That is a hard word to type....disorder.  

The treatment for these disorders is something called a molding helmet.  Both of the boys have been to Boston Children's Hospital to the Neuro doctor.  They took measurements and confirmed the diagnosis for them.  

Today we met with a wonderful doctor at Hanger Orthotics.  He remeasured the boys' heads,  scanned their heads, taught us some exercises to do with "J" to help with the Torticollis, and talked us through what is going to happen the next couple of appointments.    The boys loved the doctor.  "J" laughed and talked most of the time we were there.  "E" just kept watching everything the doctor was doing and taking it in.  Both boys were all smiles.  I was a very proud mama, because their behavior was perfect for how long the appointment ending up being.

This has all been so overwhelming; emotionally and financially.  Emotionally, I am dealing a lot with guilt.  I hate that my boys are going to be wearing helmets for the next who knows how many months.  I don't want them to be upset.  I don't want them to cry or be sad.  I don't want people looking at them and wondering, "What is wrong with that kid?  Oh, those kids?"  I just want my happy healthy boys.  Financially, Tricare does not cover molding helmets and the cost is thousands of dollars.  I can't even get into this right now.  I am so annoyed!  They will cover a boob reduction, but not a helmet that will help prevent so many things for a new little being.  I really can't get started on this topic....  

I wanted to blog about this, because quite honestly, I don't know how to talk about this to people.  I don't know how to say any of this.  As I am typing, I am in tears.  My wonderfully supportive hubby did have the best way to try to calm me down about all this.  "Think of this like braces for your teeth.  They'll wear the helmets for a bit and then everything should be straightened out."  While I see his point, a mama can't help but hurt for her babies. 

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