Mar 7, 2008

Two Funny Noggins



And as one of my ultra-favorite Ethio-adoptive moms pointed out (Hi MP!), some hair is finally appearing on those two funny noggins! I knew it had to happen sometime. . . from bald for sooo long to woolly fuzz, and now finally turning to softer and curlier and oh-so-ultra cute.

Now come closer readers, this is where it turns more serious and personal. I've been living with some major fear and worry the past several months. Around last fall I began noticing a midline keel on the foreheads of my identical pair, Bereket & Sira. Look at the pictures above, taken last September. Trace the line that runs down the foreheads of the "twins". Look at those serious profiles. It was these pictures that really got into my head. They are among my favorites; all three boys look so darn cute, but the foreheads of Bereket and Sira . . . where is that line coming from? And should foreheads stick out more than noses? I didn't know what to think at first, but began intense forehead watching on TV and out in public, especially eyeing the babies. Nobody else I examined had bony ridges in their foreheads. Finally I thought of birds and how they have keels (fused bones) in their breasts that enable flight. So I googled "keel" and "forehead" . . . holy $%*@# as my blood ran freezing cold when the scary word CRANIOSYNOTOSIS popped up. That's it! Without a doubt I was convinced. My two boys have a metopic ridge caused by craniosynotosis--premature fusing of cranial sutures. Now google long enough and you will find images of extreme disfigurations and scary possible prognoses ranging from intracranial pressure, severe headaches and seizures, to brain stunting and even autism.

A tad hysterical, I called the pedi and raced the boys in within the hour (advantages to living in small town, USA). The pedi had never brought up the CS word before, although she had remarked on frontal bossing (protruding foreheads) and tested the boys many months before for rickets (negative). Anyway, long story short, 2 X-rays and eye pressure tests later, many months of worrisome waiting, and worst case scenarios swimming in and out of my head, we found ourselves at Children's Mercy Hospital in Kansas City earlier this week, on my birthday (the big 3-8), speaking with a cranio-facial plastic surgeon--the expert. I must say that by the time our appointment finally rolled in, I felt optimistic. The X-rays had not indicated any abnormalities, the eye pressure tests revealed no signs of brain pressure, Bereket and Sira are developmentally healthy (well, there's my language and height concerns, but they're certainly doing at least as well as their taller, normal-foreheaded fraternal brother Tsega), and ridge or no ridge, they are obviously cuter than buttons. But that ridge . . . what else could it be other than metopic?

Not all cases of cranio are serious or affect brain development and health, or disfigure the head and face. Not all cases require surgery. But surgery, although terrifying (this is the head and brain we're talking about), can usually fix the problems if it is indeed recommend. The words we wanted to hear: no surgery.

And indeed my diagnosis was spot-on: Metopic ridge caused by craniosynotosis YES, but surgery no no no! Apparently their type and severity of cranio is pretty common--stage I, meaning mild without surgery recommendations. Their ridge will eventually flatten within the next 7 years of their lives and their is no compromise to brain development. I've already noticed some flattening of their foreheads and our expert doctor said the history of their head growth is normal. This is one worry we now leave behind.

Remember my dear readers, no matter how stressed you get, no matter how crazy your kids make you, no matter what, never-ever take health for granted. Think of all those sick children who've come and gone from that hospital and all those worried and scared parents, and always be thankful if you find you and your family among the living and healthy. Funny noggins we can live with. :)

P.S. Thanks and special thoughts go out to Keely and Salem; you know why!

18 comments:

Jake and Taryn said...

I LOVE the pictures of them above!They all look so cute togehter! My heart was racing reading this post and I am so thankful that they are healthy...and no surgery is needed! You are so right about healt, if you don't have your health, you don't have anything. Blessings on your 3 little ones! :)

oldkoppel said...

Oh, Cindy. I'm so sorry you went through all that worry and panic, and I'm so happy to hear your matching pair are just fine. They are all adorable!
My 8-year-old and I were watching the latest video together not too long ago. When Ben finally stopped laughing, he said, "They are so cute! I wish they were ours."
Not that you needed unsolicited shopping advice, but I think you need a jump-o-lene! Ben (who looked like a pale Tsega when he was a babe) loved his when he was younger, and Chakisae loved the one at her Mommy and Me class. Of course, it might lead to even more head bonking with your guys.
Anyway, take care,
Leslie
not sure this will work but a link so you can see the jump thing:

http://www.amazon.com/Intex-48267E-80-27-Jump-o-Lene/dp/B00004NKJ0

Lori's Light Extemporanea said...

I'm glad that they are well after all.

My Ethiopian son has a kidney disorder which brings us to our Children's Hospital on a regular basis. My word...I feel so for parents with bigger problems than mine. I'm glad you're not one of them (but hooray for Children's Hospitals!)

Julie said...

The anxiety you must have had! I am so glad that your cuties don't need surgery. Good Grief, how stressful.

Cindy said...

My goodness! I am so glad that your boys will not need any sort of surgery. They are so so cute just the way they are. :)

Stacy said...

Cindy, I am so glad to hear that this appointment came and went and you heard the "no surgery" words you needed to hear. Good job mom! The boys are adorable as always.

Chris Kirk said...

Thanks for the perspective. I can imagine how stressed your were. Ester had a simple injury a few weeks ago which made us crazy, but it seems like you handled it well! I hope you guys have a wonderful Sunday!

Heather said...

Hi Cindy! Love these pictures!! Sorry you had to go through your scare, but so glad they are healthy and happy boys! :) I just wanted to write you re: your comment on our blog re: "Twin Brother"--- Don't worry... Kyle and Owen were "nutty on each other" when they were 20 months old too!!! Their favorite naughty thing to do then was to pull each other's hair.... hard and rough (sometimes to the point that handfuls of hair would come out, often to the point of whip-lash, and always to the point that the victim would be hysterically crying). It was a daily battle with them... all day every day. Now they barely ever do anything to hurt each other, but at 20 months I never ever could have imagined that they'd outgrow it! Hang in there! :)
Heather

Ruth said...

My youngest nephew (who will be turning 1 year old on the 17th of this month) was diagnosed with craniosynotosis in December. He would have been diagnosed early except they live in Turkey and the doctors there didn't correctly diagnose it but when he came to the US it was immediately diagnosed. He did need surgery. His frontal lobe would not have been able to grow properly and it was already affecting his vision (his eyes were too asymmterical). He had the surgery in early January at Johns Hopkins. Unfortunately even that wasn't enough - in February they gave him a helmet to wear 23 hours a day for 4-5 months. He's having problems with the helmet now (a cyst on his forehead) and they are concerned the bones aren't going to fuse together (there are finger width gaps between the plates and bone fragments). We are praying he won't need any more surgeries. Even he didn't have the "severe" kind though. Anyhow I am glad your boys don't need the surgery. It was pretty traumatic for the family to go through that with the little guy.

Emily B. said...

Good for you... following your "mama instinct" and doing your own research to figure out was was going on.

I'm glad all is ok with the cuties. We love the pics!

Emily

Cindy from central NC said...

Cindy....
So nice for you to leave a comment on my blog and very nice to "meet" you. Oh, what beautiful and thriving boys you have. Wow.

You know what? You are so so right about the health thing and never-ever-ever taking it for granted. Sometimes the whole 2.5 year old twins at my age (47!!) and working full-time (but I do love my career) and my drastically changed lifestyle (blah blah etc etc), I think it's just all too much and I get a bit overhwhelmed/exhausted/whatever.. But then..then...I take a breath and remember how LUCKY LUCKY I am to have 2 beautiful thriving and healthy-as-can-be little girls and I realize that my life is easy-peasy..and a charm. I just need to be reminded of that sometimes and your post just did that for me.

Do you mind if I put you on my blogroll?

:)

Cindy

LISA said...

Dang Cindy!I'm sure you were worried sick!I was,just reading the beginning!Glad to hear all of your cuties are OK!

Deirdre said...

I'm so happy it turned out to be okay, and I'm sorry you've been worrying for so long. What wonderful boys, and what a wonderful momma.

Betina said...

Yippee for Google!

I am sure doctors hate us moms who go into their offices with a pre-determined diangosis courtesy of Google. But, really, many doctors are too busy to really look and listen, so a little behind0-he-scenes research from us can at least put them into diagnostician mode.

Good job... your boys are adorable. I love to lurk here.

Shawnstribe said...

Im so glad they are ok!!!
ive been following your blog for a while, and i love your boys.
I have twins but they are 20 now : )
xxx
s
(UK)

FrogMom said...

Hey Cindy!

I am nowhere near caught up on my blog subscriptions but J told me your news and I just had to pop in and say how glad I am to hear it :)

Christa Bertram said...

Hi Cindy, I was given your blog address from some friends after finding out my son in Ethiopia has frontal bossing due to vitamin D Rickets. He is 3 years old and the back of his head looks the worst from the pictures, but we'll see when we get there. I'm currently in the panic mode you mentioned in your post. If you have any words of wisdom my email is ccwillix@yahoo.com
Thanks and I'm so glad your boys are OK and don't need surgery. :)
Christa

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