Plagiocephaly and My Family

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We are on our way, this crisp fall morning, to Cary, NC just outside our State’s Capital. There, in a busy medical section on a large suite is Level 4. It’s a clean place with pictures of happy babies wearing Plagiocephaly helmets. Today is CDub’s fitting for his helmet.

Plagiocephaly is a condition where for various reasons the baby’s skull is misshapen or deformed. There are 5 levels of severity for Plagiocephaly, 1 being not so bad to 5 meaning there should be medical intervention. CDub’s is a 4.

There are 3 types of Plagiocephaly:
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(http://www.nuffieldcardiffandvale.com)

Connor has Branchycelephy with some lumps and bumps. His hair covers it pretty well, except the flat coning on the back of his head.

I noticed the flatness during his first month of life. I brought it up during his appointments and every time I was told “let’s see if it rounds out.”

At 5 months, I had enough. It seemed worse and I had tried repositioning at home (placing him on his sides instead of back, sitting him up off his head, and of course tummy time.). I mean CDubs cries if he sleeps on his back. He sleeps on side always. I guess it wasn’t enough or maybe my inability to get large when I was carrying him played a factor. Who knows! (And it’s nobody’s fault either)

So, at the 4 or 5 month appointment CDubs was referred to the physical therapist. The therapist checked his head size, checked to see if his cognitive development seemed on track (sometimes the shape is bad enough it can cause developmental delays). She said we couldn’t say the shape of his skull would get better or worse. We can’t predict if the shape will be a problem once his brain starts to develop and grow (will there be enough space?).

So after much talking and research, we decided though he wasn’t a 5 (for sure to need a intervention) we didn’t feel comfortable taking the chance.

We had him scanned, which he enjoyed, and we picked a helmet pattern (wish we could afford to get it painted as a Tardis Helmet!) we thought everyone would like. Then we spoke with the insurance coordinator for Level 4.

$1510. $500 due upfront, $505 due the day of the fitting, and $505 due after the 1st month of use.

This was after insurance. We had to meet our deductible and pay our half.

We were able to be financed by a medical company, thankfully. We’ll figure it out (payments), making sure we can pay them back monthly, as agreed. It’s just one more thing, MRIs for mommy can be put off, everyone has glasses, and the kitties are relatively healthy (Knock on wood). Also, I know how to… Cook on a budget as it were. Growing up poor has its advantages.

Today is the day. CDubs will be getting his helmet. Every 2 weeks from today on, he will return to Level 4 to have more of his helmet carved out and shaped.

I’ll keep everyone posted and have pictures of today’s fitting if I can. I’ll report on how he likes or dislikes it and how it effects his mood, personality, etc. I’ve been told it won’t but, all the same.

If your child has any form of Plagiocephaly the link below gave me the most help:

http://www.plagiosupport.org

(I am aware there is a a group that feels helmets of this type are not needed or simply cosmetic. We did our research, thank you for your concern but, we’re fine with our decision)

If you need finical help, ask your center if they would accept a medical credit card like Care Credit, or see if you can get a personal loan.

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6 Comments

    1. afternoonofsundries

      It is, my husband has never done without before so its a transition for him. Im like Ramen for a week during lunch then PBJs the Ramen again? Cool. He’s like where us my varity I cant eat this (after 2 days). He’s trying harder though.

      Like

      1. martha0stout

        We stock up on food storage items when able (sometimes it’s just an extra can of something here and there). Spices, with spices you can make dinner each night be from rice and tuna but taste different.

        Like

    1. afternoonofsundries

      😀 thank you, I appreciate that! I believe, in my own limited way that we will all someday “Come into our own.” I dont expect riches, that comes with its own troubles but i hope for the day I can say, “I can put by extra this month into savings.”

      Someday 😀

      Like

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