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Wednesday, July 15, 2009

Questions and Answers

Let's talk about my head, shall we?


Erin asked:
Will you get the cool custom airbrushing?


We will be decorating her contraption in such a cool fashion ALL the babies are gonna want one. And maybe even their parents, too. Because nothing is cooler than a big plastic helmet.


Theresa asked:
Can they make her band hot pink?


No, they all come in white, but WE can make it hot pink, or blue, or green, or swirly....the possibilities are endless!

Sarah asked:
How obvious is it, Jody? I mean, did you notice it on you own or did a doctor have to point it out?


VERY obvious, and we had it pointed out to us the day after we got home as something to "keep an eye on" by the doc we saw the morning after getting back in the country and were told to really try to work with repositioning her at her feedings, sleeping times, etc. But, honestly, it got put on the back burner when we were working on her breathing issues (not her head on the back burner b/c well, that wouldn't be right and all, but the thought about it) One day shortly after getting out of the hospital we were at the park. I was swinging her in the little baby swing which afforded a great top view of her little head and I looked down and went "WHOA! that's not a normal shape at ALL!" and felt the "oh no..." feeling growing in my stomach. We doubled our efforts of repositioning and trying to keep her out of car seats/bouncy seats as much as possible. As an aside, she also has a condition called torticollis which means she has a shorter, tighter muscle on one side of her neck which causes her to hold her head at a tilt. This is very often present in children with plagiocephaly-they tend to lie in the same position all the time b/c of the tight neck muscle, which causes the flat spot to get worse, and it is kind of like a chicken and egg thing. A lopsided egg, that is :) Anyway, when we were on vacation her torticollis was VERY pronounced (she tends to tilt way more when she is tired or somewhere unfamiliar b/c it is most comfortable and therefore comforting to her. We were really getting concerned and were anxiously awaiting our next doctor appointment to talk to the doc about it.

Was it your regular doc who found it or a intl doc? Did he/she see it at your first appt?

At our next doctor appointment with our regular family doc, I asked specifically for him to check it and he basically told me what I was fearing-it is a very significant flat spot, it is really not going to correct itself, she will always have the flat spot/lopsidedness which could be covered up by her hair later in life and we can either live with it, or our only real option for treatment is a helmet. He supported either decision and said he was happy to refer us to a specialist if we wanted to have it looked at and he gave us a few days to think about and look into our options. Our pediatric pulmonologist had pointed it out, as had a friend who is a nurse, as well, so it was not like we were seeing things, but whether or not to treat it was really the question we had as it is no small decision. Anyway, the next day was our 1st post placement visit with the social worker and she, truly very kindly and gently, asked "so, what are you all going to be doing about her head?" She told us she noticed it immediately when she came in and knows for sure at the big adoption clinic near her (she is 3 hrs away from us) they would immediately refer Zoe to be evaluated and treated b/c it really looked, to her, pretty severe. She really was great and talked through the pros and cons of it with us and we knew from our own research that if we did it, we would want to go to the clinic in Named Charlotte. So, that very afternoon, I called them and asked them 50 million questions and then set up an appointment for the next week. At that appointment, they do all sorts of measurements and pictures (where they completely slick her little hair down so they can really see it-she looked very, um, lovely, with it all combed absolutely flat to her head, her little torticollis-y head cocked to the side b/c she was in a new unfamiliar place, and her tongue hanging out b/c she does that ALL. THE. TIME.--and drooling, which she also does ALL THE TIME, for good measure. It was a vision of pathetic-ness, poor thing.) Anyway, after all that, one of the physical therapists came in to go over all the data with us and show us the photos. It was quite obvious that the treatment was absolutely necessary if we wanted her head shape and ear and eye alignment to be normal, and while it will not affect her ability to live or anything, the problems it would cause if we did not treat it now when it is treatable far outweighed the negatives of not treating her. So, we will be picking her little helmet up in a week and will get her little noggin right where it needs to be!





For the record, I know it seems like all the sudden there are several babies that have come home with this problem (there have been 5 that I know of in the last year, including ours-but really that is a very small number considering how many have come home in total) and a lot of you fellow adoptive parents are feeling concerned about your own little ones. If you are worried about your child's head, check with your doctor, but it is not something that happens to every baby and yes, it happens from too much back time, but can also happen in utero from positioning or as a result of the torticollis. It is not at all an "Ethiopian baby" thing nor a Hannah's Hope thing, specifically-there are lots of US-born babies with the same issues as there has been a huge increase in the number of cases of plagiocephaly since the launch of the "Back to Sleep" campaign in 1992. I wanted to state that we this is not something we are doing just to make our girl look pretty, it is not just a cosmetic thing and we really truly would not even consider it unless we thought it was severe enough to merit this treatment b/c quite truthfully, it is wildly expensive and not at all convenient as we have to drive the almost 3 hours to Named Charlotte and back every other week for her adjustments as she grows. So, do your research and follow up with your doc if you are truly concerned, but please don't worry about it if you have not thought it was an issue before :) Hope this helps clarify things for y'all--I know in the blog world b/c it is so public, it can seem like it is something "everyone" is doing, so I just didn't want to cause any undue panic :)!!

14 comments:

Andrew and Amber said...

We just brought our son home early this month. He also has torticollis and a weird flat spot on the back of his head. he hasn't been seen yet by the adoption medicine specialist but a helmet may be coming our way as well.

Michael said...

My little lady had a helmet too...we are done with it now!
I sould send you a picture, she looks super cute!

Michelle
www.mfamilyblog.blogspot.com

Erin said...

Can I vote for glitter and rhinestones? Pleeeease?

Dawn said...

well said :)

Troy said...

Being married to a pediatric physical therapist, I hear about the #'s of torticollis/flat heads/etc. It is definitely not just an ET thing. Amber actually gave some documentation and talked to Almaz while we were there about some specifics they can do. Almaz was very open to anything and had Amber evaluate a few kiddos as well. You could tell she knew what was going on and wanted the care to be the best ... not that you didn't already know that :)

Eastiopians said...

Thank you SO much for sharing! You did a great job of explaining all aspects of it. I had not a single doubt that you guys were doing it b/c it was in her best interest medically. You are great parents! She is a beautiful baby!

Theresa

Are These Kids All Yours? said...

You have been very informative about this and thank you for clearing all that up. I had never heard of it. Thank you for being open and honest!

Brian and Autumn said...

oh the helmet...we only have 2 weeks left!! the technician LOVES Elias and asked, "so when are you guys gonna start your next adoption because I'm going to miss you guys?" I laughed then she said seriously, "no seriously, when?" and followed up with "you know most of our clients are international adoptees..." i told her Lord willing soon :) It will be over before you know it and she will be eternally grateful!

Sarah said...

Thanks for the info, Jody!

Aren't you just so relieved to have her home in a place where she has access to help like that -- expensive though it may be? Hooray for Named Charlotte!

I'm thinking Melat's melon is just plain large, though rather triangular. But then, its proportionate to the rest of her 90th percentiled-ness.

I'm with Erin on the rhinestones....

Maria and Family said...

what a beautiful princess , crown and all :) sorry she has to go thru this all. little baby has had so much going on but she sure is smiley :) :)

Kristi J said...

wow, great post about it...well done!! I did get my girls head looked at since reading your all's posts and they agree that is is a funny shaped head, but that it is probably genetic and all agreed that she didn't need a helmet..maybe just some hair so the funny head shape isn't so noticeable :) She has a heart shaped head...(my doctor called it cone head :) We said it is heart shaped because she's full of so much love :) ha...Thanks for your great post, kj

Michelle Riggs said...

Thank you so much for praying for Abby. I am praying for your daughter, too.

Stacy said...

My niece just got her Doc Band today!! How funny that I just happend on your blog! My sister put her daughters name on it with cute stickers and..rhinestones, and then she is going to put a bow or flower on it to match her outfits! Its very cute, and I am sure your daughter will thank you for her round head someday! Your daughter is adorable!

Kristi J said...

ok, (in response to your comment), I seriously went all the way to KY the other day to visit my grandpa and forgot my 2 year olds shoes too...All day, eating at restaurants and NO shoes...playing on playgrounds, etc...I got lots of looks, but I figured I was in KY so it was OK, ha
kj