On Monday, December 22, we headed over to CHOP for our equipment orientation....And we came home activated! Don't get excited!! She still won't hear the Christmas carols this year, or the chaos of mealtime with the family. At this time, her programs are so soft, that she isn't even getting speech. Just some environmental sounds. I am guessing, the programs are slightly above what her natural unaided hearing is/was. (As you know, she no longer has any hearing in her implanted ear.)
We did capture it on video and it was extremely uneventful. Not one single response that an untrained viewer would say, "ooooh, she must have heard that!" She didn't look up to the clanging, light up toy in the box when he played the tones and beeps. She didn't look up once as the audiologist went through the ling sounds when he turned the microphone on and was speaking to her. Nothing at all. She was very engrossed in the toys and we are assuming since the 'sounds' are now electrical impulses, her brain has no idea what to do with that information coming in yet. However, I am happy to have the video as a baseline to see her progress through time.
So we start out on P1 (program one) volume set to zero. Zero doesn't mean there isn't anything happening, it's just the lowest setting. We then can bump it up as she is tolerating it. Once she gets to 9, and is comfortable with that amount of stimulation, we can move to P2 (program two) and start the cycle over again. It is expected that we will spend about two days on each program before we move to the next. We have 4 programs set on the processor, but all of them are really, really soft. This first week is just so she gets used to the equipment. We don't want to scare her or have her dislike the processor. She ultimately needs to bond to this equipment.
Well, when they tell you the challenge will be keeping it on her head, they weren't kidding! What a nightmare! I am exhausted! :-) For those of you who know Mikaela, she is such a head rocker! (Side to side, not front to back - in case you don't know her.) So the darn thing flops off all the time. Yes, yes, I know.... toupee tape. Did that, not a big help! Yes, I do have the snug fit on there as well. My, my, my.... I now have another full time job.
Yesterday, her first day of activation, was not the best because of her being so tired. We had to be ready and leave for CHOP by 7...she usually sleeps until 8 or so. Not to mention she slept like doggy-do the night before. Needless to say, she was really cranky and the new electronic stimulation in her head must have pushed her to the edge. Lots of tantrums and real tears. Today was a bit better. Only a few meltdowns in the morning. Once she woke up from the afternoon nap, she was more like the Mikaela we have all grown to love so dearly!
Our TOD came this morning and reminded me to start the processor at P1 Volume 0 every time I put it on her after sleeping. So, first thing in the a.m. and same deal after nap. It's like turning the bright light on first thing in the morning, only electronic impulses inside your head....can you imagine it? In addition, I do turn it on first, then put it on her. The processor model that we chose does have a 'ramp up' that some recipients say really bothers them. So, at this time, I am choosing to avoid it.
Even though she can't hear speech with the selection of programs we have, I have begun narrating my entire life. I have adopted the concept that today is the first day with my new ears. Every sound in the house is new.... I am attempting to listen as Mikaela is listening. However, since I have the knowledge of what the sounds are, my job is to point to my ear and say, "I heard that! Did you hear that??" Then I tell her what made that sound, pointing to it. "It was the chair, or It was the telephone, or It was the timer on the microwave, or It was the dog, Otto, etc." Like I've said before, thank God I am such a talker! It will serve Mikaela well.
We are taking the first baby steps towards the 'learning to hear' portion of Mikaela's Path. Inch by inch. All in her perfect time.
We did capture it on video and it was extremely uneventful. Not one single response that an untrained viewer would say, "ooooh, she must have heard that!" She didn't look up to the clanging, light up toy in the box when he played the tones and beeps. She didn't look up once as the audiologist went through the ling sounds when he turned the microphone on and was speaking to her. Nothing at all. She was very engrossed in the toys and we are assuming since the 'sounds' are now electrical impulses, her brain has no idea what to do with that information coming in yet. However, I am happy to have the video as a baseline to see her progress through time.
So we start out on P1 (program one) volume set to zero. Zero doesn't mean there isn't anything happening, it's just the lowest setting. We then can bump it up as she is tolerating it. Once she gets to 9, and is comfortable with that amount of stimulation, we can move to P2 (program two) and start the cycle over again. It is expected that we will spend about two days on each program before we move to the next. We have 4 programs set on the processor, but all of them are really, really soft. This first week is just so she gets used to the equipment. We don't want to scare her or have her dislike the processor. She ultimately needs to bond to this equipment.
Well, when they tell you the challenge will be keeping it on her head, they weren't kidding! What a nightmare! I am exhausted! :-) For those of you who know Mikaela, she is such a head rocker! (Side to side, not front to back - in case you don't know her.) So the darn thing flops off all the time. Yes, yes, I know.... toupee tape. Did that, not a big help! Yes, I do have the snug fit on there as well. My, my, my.... I now have another full time job.
Yesterday, her first day of activation, was not the best because of her being so tired. We had to be ready and leave for CHOP by 7...she usually sleeps until 8 or so. Not to mention she slept like doggy-do the night before. Needless to say, she was really cranky and the new electronic stimulation in her head must have pushed her to the edge. Lots of tantrums and real tears. Today was a bit better. Only a few meltdowns in the morning. Once she woke up from the afternoon nap, she was more like the Mikaela we have all grown to love so dearly!
Our TOD came this morning and reminded me to start the processor at P1 Volume 0 every time I put it on her after sleeping. So, first thing in the a.m. and same deal after nap. It's like turning the bright light on first thing in the morning, only electronic impulses inside your head....can you imagine it? In addition, I do turn it on first, then put it on her. The processor model that we chose does have a 'ramp up' that some recipients say really bothers them. So, at this time, I am choosing to avoid it.
Even though she can't hear speech with the selection of programs we have, I have begun narrating my entire life. I have adopted the concept that today is the first day with my new ears. Every sound in the house is new.... I am attempting to listen as Mikaela is listening. However, since I have the knowledge of what the sounds are, my job is to point to my ear and say, "I heard that! Did you hear that??" Then I tell her what made that sound, pointing to it. "It was the chair, or It was the telephone, or It was the timer on the microwave, or It was the dog, Otto, etc." Like I've said before, thank God I am such a talker! It will serve Mikaela well.
We are taking the first baby steps towards the 'learning to hear' portion of Mikaela's Path. Inch by inch. All in her perfect time.
3 comments:
Oh my gosh! What a great surprise! Congratulations on the activation! I can only imagine what it's like, and I can't wait! Merry Christmas to you and your family, and enjoy the start of a fantastic new journey!!!!!!!!!!!!!!
YEAH Mikaela~ What an exciting Christmas present!!!!
I am so happy for you guys ~ this is the start to a very exciting journey!!!
Hello,
I am studying to be a pediatric audiologist, and came across your blog while looking for an image of the speech banana for a presentation.
Thank you for all of the effort you have put into blogging Mikaela's story. It has been incredible to read this blog, and to hear this story from the parent perspective.
You have a beautiful daughter, and I wish all of you the best!
Nicole
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