Sunday, August 12, 2012

The Race is On

Last week Gili started pulling up to a standing position all on her own. Now she is really getting around. Lil Bro started pulling up to a stand yesterday. Now the race is on to see who will walk first!

I had sort of thought once Gili got her AFOs she'd take off. It seems quite the opposite has happened. To begin with, she doesn't seem to like the AFOs very much. I suspect they make it harder for her to stand. I think a lot of what my husband thinks is strength is really stiffness related to her cerebral palsy. In order to put on the AFOs, Gili's foot must be flexed more that 90 degrees. The lady who fit her AFO's explained to me that bending her knee with help her ankle bend. It's called total flexion. The opposite, which is her usual standing position, is total extension, with the leg straight and the toe pointed. I think that the AFOs cause her foot to flex, which releases the hypertension in her legs, which usually helps her (or forces her) to stand. So that's my theory.

I also can't find any snug, smooth, long  socks to fit with the AFOs. I'm planning to order AFO Interface Ankle Compression Socks.

Just a couple other things I've been meaning to mention:

Please do not repost this image
At Gili's appointment with the new neurologist, he asked about her microcephaly. I said that some doctors said Gili had borderline microcephaly. He measured her head and said she was so many (don't remember the exact number) standard deviations from the mean, and by looking at her it's obvious that she has microcephaly. My husband and I gave each other a slightly bewildered look to say, "Her head is obviously too small?"

Gili also has pectus excavatum. Have I mentioned that before? I took some pictures of my little ones having fun in the bath, so I thought I'd share a picture to show her chest. I think at this point we've decided not to see a specialist and open up a whole 'nother can of worms. Though, personally I'd like to know if it's affecting her breathing or anything else. Usually it's just cosmetic, but hers is pretty severe. The doctor we would see about it is a surgeon, so my husband said, "no way." I just thought I'd let you see what it looks like.

If you look closely at the picture, you can also see the redness on Gili's cheeks. Her cheeks, chin, and the top of her nose are extremely chafed, dry, red, and calloused. I think it's a combination of drool and scratching herself when she chews her hands... another problem on it's own.

Speaking of chewing... I set up an Amazon Carousel to feature some things we like. Except for the iPad and LeapPad items, I own and love all those things. We especially can't live without the Graco Electric Nasal Aspirator and Massaging Teether.

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