Sunday, April 15, 2012

How do you spell P-A-T-I-E-N-C-E?
Now that Amelia is back from Italy and has her ABI, we all just want to get on with it and see lots of improvement every day. So many people have asked me: Can she hear now? Can she talk yet? But that’s just not how it works! The process of learning to hear is very, very gradual and we have to be patient and allow Amelia to adjust to sounds at her own pace and in her own way.
And wanting to do things her own way is just what Amelia is all about at the moment. She is a two-year-old after all! The phrase, “she wants what she wants when she wants it, and she wants what she wants right now” could have been written just for her. And she lets us know exactly what “Amelia wants“. If Siena has it, “Amelia wants” it too. If there is something on my plate that looks different than what’s on her plate, “Amelia needs’ it. If you are wearing a necklace or a watch, “where’s Amelia’s?“ If she sees a book she would like to read, she points and signs “Amelia read book“ until we do it. If she feels like playing with a certain toy, she signs and prods us until we figure it out. If her toys are not set up the way she likes them, she rearranges them her way. If she decides that she does not want to do something, she lets us know that also. Her little hands are always busy and she’s signing all the time. And when we can’t read her signs a little fussing and whimpering usually gets the desired results. That is not to say that we have a little tyrant on our hands, because Amelia is usually a happy little girl and fun to be around. But she knows her own mind and makes sure we do too!
So what’s different since the operation? Well, Amelia can’t tell us what she is hearing, but we are very sure that her world is changing. She wants her ABI attached the minute she wakes up in the morning and again as soon as she gets up from her nap, which tells us that she is eager to experience whatever it has to offer. We see her playing with toys that make noise in a different way now. She has always enjoyed pushing buttons, but now she pushes them over and over with purpose. She wields the little wooden mallet on her peg-bench with much more enthusiasm, and when she claps her hands she now does it harder so that it produces a noise. She has no idea what any sounds mean or even where they come from, but little by little she will start to isolate noises and learn their meaning. She doesn’t seem to tune in to our voices yet (we are told that will take the longest), but she can tell when we make kissing noises! She recently learned to pucker up for a kiss, so we practice that a lot. She also loves to tap her spoon or fork on various dishes and glasses and it has become a game at every meal time. A few days ago she became interested in a squeaky dog toy and her plastic bucket full of Legos is now much more fun to shake and shake and shake. So there are many little signs of progress and we’re thrilled with each one of them.
And she hit one more milestone a few days ago. She jumped for the first time . . . both feet an inch off the ground at the same time, so exciting! This may not be a big deal for other kids her age, but without a balance nerve it’s an achievement.
Last week DJ took Amelia to the eye doctor and even though she has been there before and not gotten hurt in any way, she started whimpering while they were still in the elevator and kept it up during the whole examination. Obviously she has not forgotten her hospital experience, and we are concerned about her visit to the House Ear Institute next week. A representative from MedEl Europe will be flying to LA for this initial mapping of her ABI and to go over the programming with our audiologist there.
If Amelia cries the whole time it will make this process much more difficult. So, once again we are asking your prayers for Amelia to be calm and content while this important work is being done.

Wednesday, April 4, 2012

A quick update and some pictures

Amelia's ABI
She's very excited that her doll has an ABI too :)

We are very pleased to report that Amelia is doing very well with her ABI.  When she wakes up in the morning she points at her ear to let us know to put it on.   She wants it off before her nap but asks for it immediately after she wakes up.  She is responding consistently to loud sounds, esp clapping and tapping utensils on plates.   We weren't expecting her to have any response to sounds for at least a month so we couldn't be happier with her results so far.  We have her first appointment for mapping (sound adjustment) at House Ear Clinic on April 18th.  A representative from MedEl Europe will be flying to LA for her initial map to go over the programming with our audiologist there.

We are busy trying to get back to our "normal" routine which means I have less time to do updates but I will do my best since I know so many people care about Amelia and are anxious to hear how she is doing :).