December 2009


It’s not so bad.  I mean, yeah, it’s a bit unwieldy and rougher against my arm when I feed him a bottle. But it doesn’t look sterile (even undecorated in white) and Little Man looks rather cute in it.  He really isn’t crying or sleeping any differently. He does not like when I take it on and off for his exercises (for his Torticollis) but beyond that, seems to be adjusting well to his new “chapeau.”

After months of feeling guilt for allowing my son’s head to flatten, I’m now feeling HOPE that by wearing the DOC band that he’ll have a base of his skull again.  Even though this has cost us a lot financially, I went to the right place for my son.

I’m going to add a “page” to my blog with before photos and share them with you.  I know there are other moms who are dealing with plagiocephaly, brachycephaly, scaphocephaly and torticollis.  But I don’t want this to be the ONLY focus of my blog.  This is just a part of Little Man’s life—and mine.  Motherhood is full of challenges and celebrations and I want to document as many of them as I can.

Little Man will be my only child and I want to ENJOY his infancy and his milestones and ever-developing personality.

So the helmet is just a part of his life—it doesn’t define him.

There’s a new driver in town—Little Man!

Little Man is getting his DOC Band today. I’m a jumble of emotions right now. I’m still feeling so terribly guilty for letting him sleep for hours on end in the same position in his infant carrier. And while I know I didn’t KNOW, it’s still hard to move past this. My husband keeps saying “it’s not your fault” but I was home alone with him for two months.

That sick feeling gets worse when I see photos of him from his first 6 weeks of life. It’s like the flatness happened overnight. But, honestly, it just got worse over the last two months (even though I kept him off his back as much as possible) and I’ve since found out that it’s NOT easy to reposition for Brachycephaly.

So now I’m feeling hopeful that Little Man’s head will finally “round out” and that he’ll do leaps and bounds better developmentally once his head is more balanced on his shoulders and not “front heavy”.

I haven’t really posted any photos of Little Man, but I will as his journey with Brachycephaly and a DOC Band continues.

Not much for this blog except for the bare basics.

Birth
Weight: 9 lb
Height: 20-1/2″

4 Months
Weight: 17 lb 12 oz (90th percentile)
Height: 25-1/4″ (60th percentile)

He’s a big boy!

Little Man goes for his scan at Cranial Technologies this week.  My husband and I decided to go with an active band (and pay out of pocket) rather than get a passive one (from Hanger) even though our insurance would pay 100% for it.  Yep, we’re paying $3600, which we don’t have since I really haven’t heard well of passive bands/helmets from other plagio moms.

I got a better feeling from CT. They ONLY do this. Hanger, while it seems like a great company, does not.  Plus they helmet for 6 months as opposed to the 2-3 estimate from Cranial Technologies.  I know it could take longer and, honestly, we most likely would not go with a 2nd band if the improvement is good enough. But I felt more confidence in the staff of CT and am very optimistic about how Little Man will do.

On a positive note, my parents and Dude’s parents are going to help us financially.  So the cost of the helmet isn’t so scary high. It’s still a hit, but their help has eased some of our burdens.  And it goes to our out-of-network deductible… that’s something, right? I just need to make sure that CT submits it to our health insurance.

Another thing that’s helping us is a Care Credit loan. It’s like a credit card for health care expenses. Only that you get a 0% interest option for up to 24 months—though in this case it was for 12. But 12 is better than nothing, right?

In other news: Little Man is 4 months old today!

He goes for his well baby appointment (and shots… poor guy) on Wednesday. I’m so curious as to how big he is.  I’m guessing he’ll have doubled his birth weight and be 18 pounds.  And I hope the pediatrician gives the go ahead for rice cereal, since he’s always hungry. I’ll update on Wednesday and will share his 4 month photo.

And as an update to his Torticollis, he’s doing really well in physical therapy.  I’m really glad about that.  I hope he’ll only go for a few more months.

When I started this blog, my first entries were about Little Man’s two month well baby visit and the fact that he was diagnosed with Torticollis and Positional Plagiocephaly.    When I went to his three month visit (with another pediatrician in the practice) I brought it up and how his head shape hadn’t changed. That doctor suggested I take Little Man for an assessment at Cranial Technologies, who makes the DOC band for reshaping babies’ heads.

I had a feeling that my son would need a helmet and I even figured out what type of head shape my baby had.  It was confirmed that Little Man has Brachycephaly and, to my surprise, a technically severe case.  I say technically since he looks like a moderate case (if you click on the link and view the photos) but by his measurements—100%, which means his head is as wide as it is tall and it should be 1/3 taller than wide—his case is severe. So a DOC Band was recommended.

I’m now waiting for their insurance coordinator to contact me.  The chances of our insurance covering this band is pretty slim, especially considering our policy has an exclusion for orthotic devices for reshaping purposes. And that really sucks since the cost for one helmet is $3600 and sometimes babies need two.  But I’m praying that our son will only need the one and will only have to wear it for 2-3 months.

It’s so weird saying 2-3 months when he isn’t even 4 months old!  He’ll be wearing a DOC band until he is 7 months old (give or take) and that will be about half his life. But for his future well-being, my husband and I will be going ahead with this, regardless of what our insurance does or does not cover.

Apparently babies with untreated brachycephaly have increased risk for ear infections, TMJ and often do not fit into bicycle helmets (or football helmets).  It’s very difficult to reposition a baby with this type of plagiocephaly and, thus, banding is very often recommended.  Add to the mix Little Man’s Torticollis… well, it’s a long road ahead of us.

So in the coming weeks, I’ll probably blog a lot about the process of getting a helmet and my financial woes as a result. But I’m doing what’s best for my son and his future head shape. I hope he won’t be too irritated by the helmet once he gets it.

I’m also a woman.  And being a mom isn’t the only thing that defines me.  Though it IS something I’ve yearned to be for years and I am so grateful to be Little Man’s mother.

I was a daughter and granddaughter before I was a woman or wife (or mom) and my family is still very influential in my life.

My maternal grandmother, who I call Momma (pronounced mum-ma), is in the hospital. She had breast cancer last Spring and the probability that it’s returned is high. Yet her symptoms (high calcium levels) aren’t easily diagnosed to a cause.  No matter what is causing the increase, she is still weak and is hospitalized. I’m not sure how much longer she’ll be with us. I want her around, but I don’t want her to suffer.  My grandfather died from lung cancer two years ago and he wasted away. Momma would not want that for herself.

Momma has always been a polarizing figure in my life.  I’m not sure mere words can explain her impact on my family.  My mom and aunt have been shaped by her in very different ways. It’s interesting. My mom did whatever my grandmother told her. Momma is like a force of nature.  And she will walk up to complete strangers and ask them their life story—and share much of hers.  My cousins used to be embarrassed by that, but I just found it amusing.

Momma always says to me “you tell it like it is.”  I got that from her.

Mind you she’s a piece of work at times. But mostly I think of her as a “grande dame” of yesteryears. She dresses in pumps and skirts (NEVER pants) and her pearls. Yet she’ll wear a robe around the house. It’s odd.  And she’ll tell you things “for your own good”. Like if you have a pimple. Or if your gray roots need covering. But she “means well.”

Yet she truly does. She’s helped me financially and she really cares for her family.

I don’t know how long my grandmother will be around, but I’m glad she got to see me become a mom and be a great-grandmother of 3 (including my cousin’s 2 children). Hopefully she’ll see more of Little Man’s milestones. You never know.

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