31 December 2008

sad news

sad for me.

we finally had our meeting with the cranial specialists. virginia was diagnosed with plagiocephaly. the flatness on the left side of her head is affecting her ear (shifting forward) and eye (facial asymmetry.) she was measured and photographed repeatedly for her custom designed helmet. because she is growing so quickly she starts treatment next week. we tried at-home positional therapy and it obviously didn't work. I am having a fit.

ginny has always favored the left side of her head. we're told that most likely this started in-utero. sleeping on her back (as you know, to avoid SIDS) has only added to the problem. we are instructed to do physical therapy as well to help strengthen the muscles in the right side of her neck. she hates it! tummy time is usually a battle with lots of tears. we have a lot of work to do.

in the meantime I will join (yet another) online group for support. the therapist suggested we do so to "talk" with other parents. ginny is expected to sport the helmet for at least 2 months, 23 hours a day. we will see the specialist once a week for adjustments. it's a 45 minute drive each way. shit. nothing is easy. but after extreme infertility, an anxious pregnancy, HORRIFIC labor and delivery, hospitalization for jaundice, episiotomy incontinence, seriously infected nipples, never ending UTIs, a bout of colic, breastfeeding "gone wrong," and single parenthood, why should anything be easy?

if anyone has any experience with plagiocephaly I'd love to hear your story. in the meantime we will have to take tons of pictures of our beautiful ginny with those sweet, wispy locks.


AwkwardMoments said...

Why does the world just seem so unfair and cruel sometimes. You and your new journey of treatments and dr's appointments are in my thoughts.

I am sending you and lil ginny all the good thoughts i can muster

Aunt Becky said...

My cousin's daughter had this, along with the helmet and today? She's perfect. Looks absolutely perfect. Honestly, if I hadn't known (she and Ben are the same age), I wouldn't have guessed. She's 8 now.

DAVs said...

One of my good friends' kiddos had this many years ago. He turned out just fine. I know it isn't easy and you are CERTAINLY due for some good luck/easier times.

Ginny is super adorable!

Erin said...

I have worked in child care and education for many years. I have worked with 4 infants with helmets for problems of all different kinds. At least they caught this while she is young and she'll never remember wearing the helmet. Think of it as an accessory! I hope everything works out OK.

bleu said...

One of the lil ones at Finding Chaos is just finishing up with his helmet therapy.

Here is a link if it might help to connect to another mama who went through this with her child.


Aurelia said...

We are currently doing the helmet. Julius has plagiocephaly and I was freaked but honestly it's no big whoop.

His eyes were becoming uneven and his ears same thing, but after only 3 weeks in the helmet, he's vastly improved.

We started at six months (our hospital won't let any kids start earlier) and he'll be wearing it 18-20 hours a day until one year.

We went to an osteopath on our own, but the orthotist who did the helmet really said it or physio was not needed, just a nice extra if you have the energy.

Email me or check out my blog if you want to ask anything. Take care!

MrsScrapDiva said...

My son was diagnosed with plagiocelphaly and wore his helmet from August to November (2005). It wasn't easy but once and it was over and done with, it is like it never happened. It is hard to explain but there are so many milestones and sweet smiles along the way, the helmet was just there reshaping his head.

My husband is the one who first noticed the flattening of his head. He always slept on his back and he was a great sleeper. Our pedi first had us do the exercises and encourage his to turn his neck the other way. After a few months, we travelled up to Dartmouth Hitchcock Hospital and the doctor told us we needed the helmet.

We did have to go for many refitting appointments etc and it was a little sweaty for him with the hot summer months. But overall he was a trouper! We got a blue helmet and we decorated it with stickers etc.

Our son will be 4 in a few weeks and his head is round for the most part. I can tell a slight unevenness with his ears and when I trim his hair.

Best of luck and email me if you have any questions. I will update my blog with some pictures for you.

Anonymous said...

Here from L&F.... I'm sorry that I don't have any helpful knowledge to offer but I just wanted to send my support...I can only imagine the frustration you are feeling after what sounds like a long battle to bring your baby into the world. I am wishing you all the best as you deal with yet another challenge.

Heather said...

Our son wore a cranial band 23 hours/day during the summer of 2006. It was hard on me emotionally at first and the appointments were annoying (I had a 45 min. drive, too). But we got used to it quickly. And the helmet and fittings didn't phase him at all. I honestly don't think he even noticed he was wearing it.

The funniest thing was that he started crawling while he was wearing it. So he got used to being able to run into things with his head and not have it hurt. It was a little bit of an adjustment for him to have it gone. :)

I will say that the one thing I never got used to was the feeling of the plastic resting on my shoulder or snuggling into my neck instead of his hair. And strangers sometimes made rude comments, but we had some good comebacks. If you ever want to talk more with someone who's been through it, feel free to contact me.