Monday, July 23, 2012
Gili got her first pair of "tzadeem" (meaning steps or steppers) today. They are pink with butterflies. She will wear them for half an hour today, twice for half an hour tomorrow, and work her way up during school hours until next week she wears them home and eventually keeps them on all day. She looked a little uncomfortable in them, but her assistant, Nina, said most of the kids do in the beginning. Here are pictures of her with her teacher Adina.
Nina is holding an iPad to entice Gili to lift her body up. You can see Lil Bro in the bottom right. After the AFOs come off each day, they will put alcohol on Gili's legs to help dry or toughen up the skin to make it easier for her to have the plastic on her legs all day.
The company that made Gili's Ankle Foot Orthosis is called Stride. Vivienne (a native English speaker) came to Gili's school to fit her last week. Then she came back today to try them on and finish them up (cutting off the extra toe room.) The physical therapist, Anna, will give use further instruction next week so we can make the most of them over summer vacation. Now I am going to order some special shoes that are specially designed for use with AFOs, called Hatchbacks, and also get her some special socks.
Above is a picture I took at the end of year party of Gili's teacher, assistants. and physical therapist.
Sunday, July 22, 2012
We just came back from an appointment with an expert pediatric neurologist, Dr. Arie Ashkenasi. Lil Bro was crawling in an unusual way, so the pediatrician recommended that we see him to rule out CP. I figured, since we’re already paying for an expensive cab ride, he should also see Gili.
It was nice to get a second opinion and he was a very nice and thorough doctor. Just a few new things… He said her movements and mannerisms were consistent with someone with an autism spectrum disorder. I guess before now I didn’t even think she was high enough functioning to test for autism, though I did think about whether she would be considered to have it. So the answer is, “yes.” And now we can add one more diagnosis. If I lived in the states where I might talk to people who don’t know what CMV is it might actually help to be able to simplify her diagnosis as having cerebral palsy and autism.
Because she wasn’t tested for CMV until she was 5 weeks old, we will never know beyond a reasonable doubt that she has congenital CMV. Therefore, Dr. Ashkenasi wants Gili to see a genetic counselor to look at her and test for any other odd possibilities like Angelman Syndrome. On paper Gili has all the symptoms of Angelman, but she doesn’t look like the other “Angels.”
Dr. Ashkenaz wants Gili to get a “sleep deprivation EEG” to get a better idea of what’s going on without artificial sedation. She already had one EEG that found nothing and one that found something odd, but nothing definitive. He also wants her to get an MRI. (Finally!) I’ve wanted her to have an MRI, but Professor Amir said there was really no point. And maybe he’s right. But I can’t help wanting to get some idea of what it looks like in her brain.
So, what else is new? We’re all excited for Gili to get her first pair of AFOs tomorrow. Gili can stand by herself holding on to something and we can’t wait to see her walk. Her eating is improving. My mother-in-law found that if she puts small pieces of food in Gili’s fingers, Gili can feed herself.
Gili was very “bitey” yesterday. She tried to bite Lil Bro a couple times. She grabbed his head in her hangs and was lunging over him like a bear about to chomp down on her prey. He’s no worse for wear and will eventually learn to watch out. Now I’m going to give Gili her pre-bedtime Melatonin.