Progress and Expectations…

February 3, 2013

Gigi started out after activation at a level of hearing that would still be considered profoundly deaf (and would still qualify her for cochlear implants).  We turned her up three “levels,” for lack of a better word, over the course of the week and she did great.  We went in Monday for another “mapping.”  We were given three new, higher levels of hearing to progress through the week with.  Her new lowest volume gives her the hearing of a person with a 40 decibel hearing loss, which would be considered mild hearing loss.  Needless to say, she was aware of more sounds now than during week one.  They told us that the third program would be quite a jump and she may not tolerate it.  We got there Thursday night, and she has done great!  She is definitely “hearing,” but this task of teaching her to look for what made the sound because it means something is a little difficult, but we’re getting better at it every day.  We are making sure we tell her “you heard it” while pointing to our ear and whatever made the sound.  I love that Sloan tells says “Gigi, I hear you!” while pointing to her own ear and to Gigi.  My little assistant.  We have also started talking with Gigi’s hand on our throats and then placing her hand on her own and somewhat surprisingly, she makes a sound.  It is more of a growl than vocalization, but she has the concept, and she is showing us, I can move mine too!  Jessie and Beck have learned how to put her processor back on if it falls off and she lets them most of the time.  Saturday, I sat in the chair and watched as Jessie was bringing her laundry down (throwing it on the stairs and then sliding down like a slide on the clothes until they all end up at the bottom – “I don’t care how it gets here, as long as it ends up in front of the washer” is the rule) and Gigi grabbed some jeans.  “Tell her where you are going Sis, maybe she will help you.”  Jessie doesn’t engage with Gigi a lot – she doesn’t exclude her, she just doesn’t always think to include her – so I am always trying to foster that idea.  Jessie dropped her arm load of clothes and signed and said “grab it” while pointing to the clothes.  Gigi grabbed the jeans, that she had since dropped, and followed Jessie who had signed “come on.”  They did this until all the clothes were in front of the washer.  It was by far the longest purposeful engagement for them yet.  Then, Jessie got out the sheet that was in the laundry, signed for Gigi to sit on it and proceeded to give her a “blanket ride” around the house.  Gigi loved it!  Sloan joined them, then Beck joined them and for quite some time they played.  Gigi played…and she had fun!  When they stopped riding on the sheet, Jessie picked her up from behind and spun around with her. She wasn’t sure about that idea, but Sloan only needed a glimpse to know she wanted a turn!  After Jessie finished spinning with Sloan, Gigi turned around and walked backwards into her to make sure she got a turn next.  It was so wonderful to watch her want to be with them.

As for what Gigi thinks about hearing, realize that none of these new sounds mean much of anything to Gigi at this point.  The primary thing that is happening is that her auditory nerve (in the brain, since that is what “hears” – your ears just get the information there) is being stimulated, maybe for the first time in almost seven years.  This is vital, and the only reason any of us can hear.  This nerve delivers sound information to the appropriate area of the brain where it is processed. The brain has to “learn” to do this.  Her brain will start with the basic skill of detecting the sound, later it will learn distinguish patterns in a series of sounds, it will then start to decide if two sounds are the same or different,  it can then start to differentiate and identify that things have names, finally the brain will be able to understand all these sounds that are pouring in as language.

We can see that she is detecting sound in some cases.  Its kind of a tough guess sometimes because of course she doesn’t know to respond to it and unlike a lot of other older children who are implanted, she has hardly any language skills.  We can’t explain to her with sign language that this is happening, what she should expect and that we need her to show us when she hears things so the audiologists will know to properly adjust her implant programs.  So, the first goal is to get her to realize that it means something and that she should respond to it.  We are doing this by teaching her to touch her ear when she hears something (like her teacher banging a drum behind her).  This could take a while of course, but we are finding lots of ways to practice.  She is working on it at school, therapy and at home so hopefully we will have success before too long.

The question everyone is asking these days is “will Gigi ever speak?”  The reality is, we have no idea, but we certainly have hopes it will happen.  We know that audiologists have told us not to expect it, that she may only gain enough receptive language to recognize her name or a few common words and phrases.  They say she might say her name one day or “Mom” and “Dad.”  Their primary goal for her would be sound awareness.  They don’t say these things without reason and scientific research is more than somewhat on their side.  The best window for the brain to learn to process auditory input is from birth to age seven.  Gigi is six and a half and so we are reaching the sunset on that stage.  Even more challenging is that she doesn’t have a first language, like sign, to bridge to spoken language.  As for when speech could happen for Gigi, realize that babies start processing sound before they are born – at about 20 weeks gestation- so we are actually starting off at a developmental level of hearing that exists before birth. I came home from the appointment where I was given that statement of expectation feeling deflated and a little sad – do they know what we just went through to get to this point!?  I am sure they do. I wanted to respond with “Oh, but you don’t know the Gigi we know and maybe you haven’t met her mom and dad.  We’re not really here to meet your expectations, we have our own, they are not for Gigi but for us as her parents and they go pretty high.  What if we stopped at the point when your expectation is reached? We’ll never know her limits until we get there – and even then, we might wonder if we’re there yet.” But, I don’t have to say it…they’ll see.  No matter where her communication skills end up, they’ll be far greater than where she started, we will NEVER be disappointed in her…and why not give her every opportunity and every prayer for complete rehabilitation?? If we didn’t believe that God can help us walk into something that seem hard, Gigi wouldn’t be here with us to start with!  We’ll be striving for speech.

If Gigi had the dexterity in her hands of a person who does not have complications from cerebral palsy, signing would be effective and we wouldn’t place so much interest on speaking.  Perhaps this will improve as she overcomes some sensory sensitivity on her palms and starts using her web space (between the thumb and forefinger) more.  These are both things we are working on.  When we think about what she has been able to overcome and adapt to in just the last nine months, she astounds us.  As Dan said, she has got to be a stress case.  She has a new house, new family, new foods, new routine, schools, cars, therapists, doctors, medication to help her focus, a compression suit, CAT scan, MRI, surgery, she is learning to do things for herself, she is learning that we expect her to do things for herself, she can eat when she wants, she can explore, she can just be free.  On top of that, she is learning sign language, and now learning that there is even more to this new world of hers with the introduction of sound!  How many of us would not be a complete mess!?  I think she is handling it all quite well considering the enormity of change she has experienced this last nine months.  We have also come to learn that Gigi knows FAR more than she lets on.  We also know that Gigi really only ever acts like herself when no one else is here…and so most people don’t get to meet the real Gigi.  I am positive that all the facts that are given to us are to help keep us grounded and living in reality.  They are given in a caring way and we absolutely believe them that research is on their side and we absolutely believe that they want the best for her.  I am glad it was said to me.  Even though it hurt for the first few hours. Sometimes that one little spark is all I need to ignite the “oh yeah, watch me” attitude that just might prove to be a necessary characteristic when it comes to parenting Gigi. For all the non-encouraging comments we will receive, we will get more that weigh in on the positive side I am sure.  Gigi’s teachers have higher expectations and her therapists have higher expectations because they see her frequently.

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3 Responses to “Progress and Expectations…”

  1. keruss945 said

    I love how you put this! I think it is true of any good parent that they don’t see limits- with great parents like you, she is going to show them for sure. I can relate to doctors telling you sad news but I always have the same nagging voice telling me that I know my kid better & spend enough time with them to not listen to cant speakers. You can. Gigi can. She will show them.

  2. Aunt T. said

    I too think, although the research says there are boundaries of what can be achieved, that no one knows what an individual can do until they do it. You, my dear, have a mindset like your Aunt T. LOL I babysat Lisey one summer when mom went on vacation. The first day I said, Do you want lunch? She shrugged her shoulders. I said, Do you know what you want? Again the shrug. Do you know what you want? Again…argggg. I’ve seen her make mom list everything in the kitchen. I thought WE ARE NOT doing this all week. So I said, Well, when you get hungry let me know. And then I walked away. Bless her she didn’t know what to make of that so she went to her room. Later, she came in and said, Terri I’m hungry now. So I said, Do you know what you want? Shrug. I turned my head away and said, When you decide let me know. Her face was priceless. So in a few more minutes she comes out of her room and said, Terri I’m hungry and would like a salad sandwich. So, I hopped up and said, Good, come help me make it. I had her show me where everything was etc. That was the last time that week for that nonsense. But as soon as mom returned so did that attitude. LOL She’s certainly pulled the wool over everyone’s eyes. Unfortunately this doesn’t help her. So glad to see that you and Dan are doing your best to stay strong. That, not feeling sorry for her, is the best you can do for her at this point. The babies being so positive and helpful is such a touching thing. Such great little helpers.. Jessie is old enough to maybe be worrying that what she does with Gigi may be wrong and she may fear doing something to set her off or maybe she’s afraid she may be doing the wrong thing. It’s hard to get into a kids head but it sounds like she’s just being cautious.
    Sloan does sound like she’s got the hang of it, but then she does have a good teacher ;-) and she’s around her more. Sounds like all is going well and we can’t wait to see you all! Give them all a hug from Great Aunt T. Love to you and Dan,

  3. Sarah said

    Agree with everyone else…your attitude about the challenges is beautiful and inspiring. Children need us to believe in them, and she’ll pick up on your faith in her and soar higher than she would if she sensed that you didn’t expect much. You’re an awesome momma, you and Dan are a great parenting team, and your kids are a delight! I love the stories about them all signing and interacting together. I miss you all like crazy and can’t wait to see you again!! <3, Sarah

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