I took Rhyan to Childrens Healthcare of Atlanta for her follow up head scan today. She is only wearing her helmet at night these days so i was nervous about how she would be looking. But i'm happy to report that she's down to a 7.2mm difference. Let me put this in perspective for you. First off, we're speaking in millimeters difference in the shape of the roundness of her head as the left side compares to the right. They get this measurement by taking a digital scan of her head and then digitally taking a spliced section of the widest part of the head (as if you were looking down on her head, the widest part) and ask the computer to take diagonal measurements. Rhyan started with an 18.9mm difference. Richard, the head scan guy, said when a kid starts with that big of a difference, they have the goal of getting them under 10mm. They feel if they accomplish less than 10mm,they have done well. So for Rhyan to be at 7.2mm and still being as young as she is (meaning she still has time to see even more improvement) is phenomenal!!! It is very exciting for us. The "normal" range for someone who has never had a neck condition like hers is a 6mm difference. So she should get very close to that. YAY!
We also went to therapy today. She has a collar that they made for her to wear that keeps her from tilting her head to the side. We havent been having her wear it b/c there were some issues w/ it, but they fixed those today. We saw a new lady (who will be her permanent new lady... no more switching) named Anitra. Anitra was very nice and very understanding of my concerns that we've not seen improvement lately. She did admit the neck muscle is still very tight and said to keep working on it and she'll decide next week, if we've not seen improvement, that she'll give us a referral for surgery. I know, its not great, but its at least moving forward. Being stagnant is no good :-(
She also said Rhyan is a "long way from crawling" b/c her tummy muscles arent strong enough. So no more jumper or exersaucer. Floor time only. We have to practice being on hands and knees, reaching far in front of her while sitting so she can grab a toy and "baby sit ups". We're deeming this to be: CRAWLING BOOT CAMP. I'm sure Rhyan will love it :-)
Ok, prayers still appreciated as we seek wisdom on how to move forward with treating our baby girl.
4 comments:
Will be praying that little Rhyan doesn't have to have surgery! (and that she'll start crawling soon). If it makes you feel any better, Raleigh was a late crawler and I've heard of some babies who never crawl. Hope your "crawling boot camp" goes well! :)
So good to hear about her little head! I'll keep you in my prayers on the neck and crawling as well. I totally agree with you about moving forward and not being stuck in the same spot...I just like to KNOW and not waste time waiting! i'm sure that's how you feel with all of this too!
I hope you liked Anitra!! Wow- 7.2 is AMAZING so jealous! I think Macy's final was 11.2. I can't believe we listened to the neurosurgeon who told us not to do the helmet. Grrrr.. I KNOW You don't want surgery, but from experience I think it is the right thing, so praying you get the referral and get it over with soon!
OH! I forgot to say that a lot of Macy's docs and therapists called her "soft" and said that she would develop muscularly "slow" She started walkign at one year so what do they know?!
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