Tuesday, January 22, 2013

A Beautiful Language

Norah is feeling so much better these days. She is more herself than she's been in several weeks. She's perky, playful, and is finally back to doing four-hour sessions on the home ventilator, twice each day. We've decided that a fair goal is to do everything we can to try to get her home before she turns two years old. Babies should get to come home before they are two years old, right? Well, I suppose that she isn't a baby anymore. She is very much a toddler (though she doesn't "toddle").

We're really grateful for many technologies that help our lives, including Norah's hearing aids. We just have to get better at putting them in consistently (us and her healthcare team included). Norah's hearing loss is moderate, which is simulated here if you're interested in getting an idea of what her world may sound like. Set your speaker volume by playing the "Normal" sample then adjusting as necessary. Then you can play the "Moderate" sample to see what various sounds are like for Norah without her hearing aids. Some of them make me a little sad, especially the music and nature sounds.

Like all parents, we want to give Norah everything that can possibly help her. Since she has been unable to speak with her trach (we've tried speaking valves to no avail), and has this hearing loss, we're learning sign language. She may decide to use it later in life, or she may choose to drop it. Either way, we want to give her every opportunity to learn and develop. To see if we were interested in their services, we were visited by a mentor from the Deaf Mentor program through the Utah School for the Deaf and Blind (USDB). Norah was nothing short of enthralled. She was enthusiastic about the deaf mentor, and even "babbled" by waving her hands around intentionally to simulate signing. Norah let us know that she NEEDED this. So we signed up, and should hopefully start soon. We'll be visited by a mentor once a week for three years... and it's a free service!

Norah's hearing loss is caused by her skeletal dysplasia. I could go into further science-y detail, but I won't bore you. I tend to geek out with this sort of thing. I'll give you the simple version, and just say that her hearing loss is permanent. So we're learning American Sign Language (ASL) from books, our USDB coordinator, speech therapist, my new favorite website Lifeprint, and soon we can add our deaf mentor to the list. We're really excited to learn this beautiful language, and Norah is too! Some of the ASL signs she has done are: eat (her first sign long ago), thank you, more, all done, bath, mama, dada, want, play, as well as her own version ("home sign") of "leave me alone". I have been teaching Harper how to say "Dad crazy". Hopefully Harper will have fun with it, too.

I hope you are all doing well during this exceptionally cold January (I heard that in Utah it's the third-coldest on January on record). My intention is to be back to blogging more frequently, but we'll see!
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