One thing that nobody's ever been able to find a good reason for is the state of Becca's hair. It's really curly, which I think she gets from me, and she tends to get a bit of a mullet because she spends so much time on the floor still; there's a swath in the middle of the back of her head where the hair never gets long because she's always laying on it... just like any kid that still spends a lot of time on their back.
But that's not the issue, that all makes sense. The question mark is that Becca's hair is still really fine. At least I think that's the problem. It seems like little babies have much finer hair than adults, and it gradually gets coarser or something. But Becca's hair is still really really fine, and hasn't grown in very thick, either. Although the thin thing might be because it comes out really easily. She usually loses a bunch if we put any ties in her hair. One time she was playing with her cousin Logan and he came over and yanked a whole clump of hair out of her head. She didn't seem to mind at all!
We've mentioned it to the neurologist and the genetecist, and they both seemed to dismiss it -- or at least, not bother addressing it in front of us. Sometimes it's hard to tell if doctors really hear you or not. When we mentioned it to Dr. Savage she said, "I assume she's had her thyroid checked." We said, "uh, no..." So we got that tested, since apparently that's a common cause of hair loss. The first time they tested her thyroid, it came back just slightly outside the normal range (now I can't remember if it was hypo or hyper... should have written it down before), so they tested it again and it came back normal that time.
The only reason I even bring this up is because none of the likely candidates for a diagnosis (Angelman, Rett, etc.) seem to list anything abnormal about hair in their list of symptoms. Nobody's ever said "oh, that's normal for kids with..." any of the possible problems Becca's got. So maybe it's a red herring, maybe it's completely unrelated, or maybe somebody somewhere will say "does her hair fall out really easily?" and we'll say "yes!" and they'll say, "well, then obviously is Kerbsmilter's Syndrome" or something like that.
I guess more importantly, because Becca's hair can't seem to get very long, we're at a complete loss for what to do with it. Most days she looks like Cindy Lou Who (or maybe Medusa) with her unruly curly locks. We've recently started putting a little pomade in it so at least the locks kind of clump instead of looking like a complete mess, but we'd love to hear any thoughts anybody has on what to do with this girl's hair.
This blog is for and about our little girl, Becca. Becca was born with low muscle tone and has been consistently behind in her development. She's now six years old and doesn't walk or talk or feed herself. In 2010 Becca was diagnosed with Rett Syndrome, a neurological disorder caused by a genetic mutation.
I love Becca's hair. I think it's adorable just the way it is :-). I read somewhere that you can use beaten egg whites for stick straight hair, run it through her hair like mousse/gel, then gel the ends. (However, with all her curl, you probably could skip the egg whites and just use mousse or gel.) End with a diffuser till it's dry. That may help keep it out of her face for you :-). Have you tried the little ribbon covered clip barrettes? That might be gentle enough on her hair too.
ReplyDeleteBut, like I said--her hair is adorable.
http://shortyrocksitshort.blogspot.com/2009/02/curly-hair-basics.html - (I browse the hair blogs to get ideas for my daughter's growing in hair. I thought this post might be helpful for Becca).
ReplyDeleteWe have the same issue with Kaycie's hair. We have only cut her hair twice in her entire life (now 3 1/2). The hair cuts were only to make it look neater, not shorter. Her hair is also extremely fine. There isn't a hair piece in the world that will stay in. Her hair also pulls out very very easily. No one in our family has blonde adult hair like Kaycie (or my son Kieffer). Gregg had hair like that until he was 10, except he was a boy so it was less of a big deal. I think it is just taking Kaycie's hair awhile to change stages from baby hair, to child hair, to adolescent, into adult hair. I'm not saying it is not a symptom but it might be more common than the doctors are saying.
ReplyDeleteHaving done hair for 8 years now I can tell you that it's a pretty common thing for young kids to keep the baby fine hair for the first few years of their life- I have seen 4 and 5 year olds that still don't have a ton of hair. It could still be a symptom of whatever condition she has, but it could also just be the way her hair grows for now. As for how to style it, I think the curl is adorable and I would maybe just try pulling the front back with some type of clip that doesn't pull too much on the hair, just to keep it out of her face. The ribbon covered clippies are a good idea, they are easy to put in and take out without pulling. Let me know if you need some, I would be happy to help! :)
ReplyDeleteIf it were me (and it isn't because I have done all the child raising I'm ever going to do) I would put lots of gel in the hair and make it stand straight out like those weird kids with black clothes and chains. Then she would scare away all the boys and none would ever ask her for a date. Or maybe just wait a while cause my sister's hair (Lorna) was verrrrry fine for many years but eventually thickened up. You choose which to do and I will support either. Dad
ReplyDeleteIf she'll leave them in, headbands can be a wonder. Eva has quite a bit of hair, but she often won't sit still to get hair accessories in, or pulls them out quickly after my pain-staking, hair-beautifying labor. but headbands are quick, don't pull on the hair, and keep it out of the eyes. bonus, bonus, bonus.
ReplyDeletei agree with cheree, at least from all your pics, unruliness aside in some of them, her hair is really cute! another curly hair thought, i'm sure you know best since, but perhaps it doesn't seem to be getting longer because it's so curly. troy's niece had that problem. it always seemed to be baby fine and never got longer up until she was four or five, but you'd pull on her curls and the child's hair would go half-way down her back, maybe that's a slight exaggeration, but you get the idea...=)