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Wednesday, July 8, 2009

Named Charlotte

We have been making several trips to Charlotte, NC lately, to be explained in a minute, and the first time we were going, my 2 yr old was a bit confused:

"Mama, we goin' to sha-lots?" she asked

"No, honey, not to Charlotte's, to Charlotte, North Carolina" I responded, knowing she meant her friend Charlotte's house.

"We gonna play with sha-lot?" she again inquired

"No baby, we are going to a PLACE named Charlotte, in North Carolina, just like we live in a place called Blacksburg in Virginia." I explained

Blank toddler stare....then "we goin' to play at sha-lots?"

"No, we are going to a place NAMED Charlotte, not to play WITH Charlotte, your friend." I explained, again.

"We goin' named sha-lot?" she asked.

"Yes! you got it, we ARE going to a place named Charlotte!" I respond, and then she ran off to tell the big Things, "We goin' named sha-lot!"
...and thus she continued to call it Named Charlotte (sha-lot) all day long and still calls it that, as do the rest of us now for that strange reason that we all do when a cutie kid gives something a quirky name that just sticks (some time I will explain why my mom is called "Woofie" by all the grandkids....).

Anyhoo, on to the reason for the trip to Named Charlotte. Our little Thing 4 who just recently joined our family needs a medical treatment and the nearest place to obtain it is in Named Charlotte. You see, our beauty is a geometry lover it seems as her sweet little head is shaped just like a parallelogram. From spending a lot of time in bouncy seats and lying on her back in the transitional home before we met her, she has developed significant positional plagiocephaly, a condition in which the skull forms on a diagonal or other abnormal shape rather than the correct round shape. It is not a life threatening condition in any way, but it does cause some significant issues with facial symmetry, jaw alignment, eye alignment, and ear alignment, all of which will only grow more pronounced as she gets older. Some babies start to develop flat spots from being put to sleep on their backs or spending time in car seats and bouncy seats, but if caught early, it can sometimes be corrected by changing up positions and increasing tummy time, time in things like bumbo seats, baby wearing, exersaucers, etc-just whatever will keep pressure off the same part of the baby's soft little skull all the time. While the awesome ladies at Hannah's Hope take great care of the children, they are limited in their ability to hold all the babies all the time and so they do have to put them in different things often that so they can take care of everyone. And fortunately, due to several cases of children coming home with plagiocephaly significant enough to merit treatment, the folks at HH are changing things up a bit to include tummy time and bumbos-we saw that while we were there in Ethiopia. Unfortunately, those changes came too late for out little lady and our early efforts at repositioning her to try to re-shape things on our own were not enough, so now she will be sporting a fabulous DOC band for the next 3-4 months. This is a partial helmet that she will wear 23 hours a day (it is off for bath time and time to clean the helmet) and it will be custom formed such that the spots that are already prominent will have the plastic part covering them so they cannot push out anymore, and the areas that need to even out with the "bulging" parts will be open so as her head grows it will fill in those spaces that are uncovered with the hard helmet part. Make sense? Clear as mud? Go to the DOC band website to see one and it will make a little more sense. This was a tough thing for us as we did not feel like tackling another tough medical thing and just want to get on with being a family together without any big drama, but ultimately it is needed for our sweet girl or she could face serious issues later in life that are much more difficult to treat. So, after a lot of research, discussion and prayer, we did our digital scan for our band today-a horrible experience that will get its own post, oy-and will pick up the band in 2 weeks after they custom make it for her little noggin. After that we will need to go to Named Charlotte every other week (did i mention it i s 2.5-3+ hours away depending on traffic??? good times in the car....) to have it adjusted as she grows and hopefully will be done with the treatment sometime this fall, when she will reveal her perfectly round head :) Of course, we think her head is just perfect right now, but we do think the fact that her ears are so misaligned from the plagio that if she ever needed glasses they would have to cut one arm a LOT shorter than the other to be a pretty significant issue, so a DOC band it is. This is just the overview of the whole process and Autumn has written a pretty detailed post of the band here on her blog if you want to know more or you can go to the website for the band if you REALLY want to know more. We just wanted to include you in our family fun in Named Charlotte and let you know why our sweetie will be sporting a fab new accessory in her up and coming pics :)






ps- If you have questions about anything with this condition/treatment, ask them in the comments and I will do my best to answer them!

11 comments:

Erin said...

Oh, big bummer. Luckily she's way cute enough to pull off the helmet look! Will you get the cool custom airbrushing like Elias? I bet you could come up with a sweet design :)

Erin
PS: So strange, for some reason I bought HH two Bumbos today. Musta been thinkin' of you!

Renee said...

I think she wanted to be like her future husband jax..I hear he is rockin the helmet to these days.

Dawn said...

Umm... I have NO questions as I too am a helmet know it all now. Her and Jax will be the cutest helmet heads around!

TPB said...

Howdy Jody,
We have a friend here, Lena, who is also going to Named Charlotte at least once a week for her daughter who was recently fitted with a band. Lena is awesome and I'll be glad to give you her info. if you'd like. Happy travels; lemme know if you wanna meet up sometime. :)

---tiffany

Tisha said...

Wow Jody... just one more thing. Hopefully this will be the last major medical treatment she will need. I will be praying that she adjusts to it well.

I am bringing a Bumbo seat to HH this weekend. We will get those bouncy seat out of there! ;)

Eastiopians said...

I didn't know anything about this condition. Thank you so much for educating me and providing that link. The before and after pictures are incredible. It's wonderful to know that this condition can be treated so successfully. Can they make her band hot pink? She'll be adorable to matter what. Thinking of you as I know this type of thing is heartbreaking as a mommy. But, you are amazing, as usual, for getting her the help she needs!

Theresa

Margaret said...

My nephew had to wear a helmet similar to what your daughter will wear. His worked MUCH faster then they anticipated :)

Are These Kids All Yours? said...

Wow, didn't know about that. Glad they caught it and it can be "fixed" so to speak. that will be a challenge for those trips.

Jstar said...

I totally hear you about overwhelming new kiddo medical issues, sister! But before you know it, the helmet will just be a normal part of life for all of you and then it'll be gone!

"Indescribable" said...

Bummer about the helmet - but on the bright side, I amazed that she'll only have to wear it until the fall..... That's fast! I guess it's b/c babies grow so fast. You're a good mommy!

Sarah said...

You want questions -- here ya go!

How obvious is it, Jody? I mean, did you notice it on you own or did a doctor have to point it out? Was it your regular doc who found it or a intl doc? Did he/she see it at your first appt? Crazy that J has the same problem. Now I'm going cross-eyed analyzing Melat's head! Her kooky hair really throws it off...maybe I'll have a look-see next time she's in the tub. Have you heard of any others from HH besides Autumn's E that are that severe? Am I just clueless because I haven't gone on the listserv since we've been back? Is this enough questions for you or would you like a few more?

By the by, Charlotte will forever make me think of a spider...

Sarah

PS Word verification: "ruslyroo" which sounds like a very cute pet name to me :)