Today was Miss Kat's one month follow up MAPing. We had to drive 2 hours in a crazy blizzard to get to the audiologist. We really didn't want to drive that far in the snow, but we knew that if we cancelled we wouldn't get a new appointment until the new year, so we borrowed a truck with 4 wheel drive, bundled up and headed out!
We had a lot to accomplish at this appointment. We needed to measure more NRI's, retest her T-levels, do a booth test, and a speech discrimination test. It was going to be a long drive followed by a hard day!
Miss Kat did amazing. She was very patient for the NRI testing and it was exactly whatever the audiologist wanted. All I know was that there was a diagonal line, and he was pleased! She also did great for her T-level testing. We had a long discussion about why so many audiologists don't do T-levels (in fact, AB doesn't pay for the time it takes, and they have a whole programming system that sets them for you) and why he does. And THAT is why we drive so far to see him!
So, next was the booth test. This is the first test since Miss Kat was activated. We turned off her aid and started with the high frequencies. The audiologist started with a very quiet, very high frequency sound. Miss Kat dropped the coin in her "piggy bank". HUH? She heard that??? I was dumbfounded! I looked up at the audiologist through the glass, wide eyed with my mouth gaping open. He played the tone again, and she popped the next coin in. I looked at the audiologist and mouthed "She heard that?!?! Are you kidding me??? I'm not sure I heard that!" He continued to play the tones and Miss Kat heard so much more than I could have ever imagined!
The audiologist walked in the room and handed me Miss Kat's audiogram. I was shocked. Miss Kat was hearing at between 25-15 db across all frequencies! The audiologist told me his final goal is to get CI users to be able to hear around 25-30 db and after one months Miss Kat was already doing better than that! She is at 15 db for 500, 1000, and 4000 hz. Wow, that's even high frequency hearing, imagine that!
I knew that the CI was going to improve the clarity of the signal Miss Kat was getting, and that she could eventually get better results than she was getting from her aids, but after less than a month, and to be getting this level of results? I never expected that!
Kat Reading
Monday, December 22, 2008
Sunday, November 30, 2008
Little update
Yesterday, Miss Kat made herself a glass of hot chocolate with nothing but verbal instructions. She understood "water", "blue", "cup", "hot", "cold", "chocolate", and "clean up". Today at dinner she understood "bread", "straw", drink", and "sit down". These are all words she either didn't know before the CI, or at least I never noticed that she did!
I also asked Miss Kat if she liked her CI or her hearing aid better. She said that she likes them both! That is good news. Then I asked her if she heard more with the CI or the aids. She said the CI. She signed "hear" on the hearing aid side and then "HEAR, HEAR, HEAR" on the implant side. She said "Implant (is) for hearing more" and then nodded as to say "seriously, mom".
Also, when we are out in public, people are starting to think we are insane. They hear us saying "That's a can-ta-lope. Do you want some cant-a-lope? The cantaloupe is ORANGE. What color are those grapes?" People look at us like we are nuts, and then they see something hanging off the side of Miss Kat's head, and then our arms flapping around...no wonder we are stared at!
I also asked Miss Kat if she liked her CI or her hearing aid better. She said that she likes them both! That is good news. Then I asked her if she heard more with the CI or the aids. She said the CI. She signed "hear" on the hearing aid side and then "HEAR, HEAR, HEAR" on the implant side. She said "Implant (is) for hearing more" and then nodded as to say "seriously, mom".
Also, when we are out in public, people are starting to think we are insane. They hear us saying "That's a can-ta-lope. Do you want some cant-a-lope? The cantaloupe is ORANGE. What color are those grapes?" People look at us like we are nuts, and then they see something hanging off the side of Miss Kat's head, and then our arms flapping around...no wonder we are stared at!
Wednesday, November 26, 2008
Intensive speech
We are starting to really up our speech session since Miss Kat is now activated and (crossing fingers) hearing well. The biggest hurdle is that be get services at the university level and semester break is in two weeks. We will be without a therapist for almost a month. Plus, the school SLP isn't on board with us (she seems to be in a whole different world, but, alas, that is a story for another time) so we are squeezing in as many appointments as we can and working at home as well.
Miss Kat had two speech appointments this week, one on Tuesday, the next on Wednesday. It looks like we are starting from scratch. Tuesday was tough. She was not vocalizing much and she was having trouble even identifying the Ling sounds. I was concerned but I knew this would happen. The therapist had pictures of three words (boat, table, banana, I believe) and Miss Kat was supposed to point to the one she heard. She got less than 1/3 right. Before surgery she was getting 100% with 6 phrases. Yuck, this is a huge step back. It is frustrating, but we knew this would happen and we just need to be patient.
Now for Wednesday. Miss Kat's session started the same way as the day before, but this time she did better with her Lings. She is still mixing up "ooo" and "mmm" but I guess that is fairly common with CI users (thanks for the info cicircle!). But then we moved on to the words again. Miss Kat was working hard, but I was so depressed. Can she really do this? It seems like an impossible task to sit in therapy and try to teach her to hear every single word in the English language! This will never work! Then she started doing better. She was able to hear the difference between the three words 100% again. Then the therapist did the phrases, 100% again. Well, at least we are back to where we were...6 days post activation! I guess Miss Kat is doing well, it just seems like an impossible hill to climb.
Overall, Miss Kat has gotten very quiet. She is no longer singing to herself day and night. She will imitate in speech, but the constant noise is gone. That is something we didn't expect. She is also IN LOVE with music. She listens to it and dances again. She hasn't done that in at least a year, (since she lost a bunch more hearing), and she is still experimenting with new sounds. She excited each time she hears something new.
Miss Kat had two speech appointments this week, one on Tuesday, the next on Wednesday. It looks like we are starting from scratch. Tuesday was tough. She was not vocalizing much and she was having trouble even identifying the Ling sounds. I was concerned but I knew this would happen. The therapist had pictures of three words (boat, table, banana, I believe) and Miss Kat was supposed to point to the one she heard. She got less than 1/3 right. Before surgery she was getting 100% with 6 phrases. Yuck, this is a huge step back. It is frustrating, but we knew this would happen and we just need to be patient.
Now for Wednesday. Miss Kat's session started the same way as the day before, but this time she did better with her Lings. She is still mixing up "ooo" and "mmm" but I guess that is fairly common with CI users (thanks for the info cicircle!). But then we moved on to the words again. Miss Kat was working hard, but I was so depressed. Can she really do this? It seems like an impossible task to sit in therapy and try to teach her to hear every single word in the English language! This will never work! Then she started doing better. She was able to hear the difference between the three words 100% again. Then the therapist did the phrases, 100% again. Well, at least we are back to where we were...6 days post activation! I guess Miss Kat is doing well, it just seems like an impossible hill to climb.
Overall, Miss Kat has gotten very quiet. She is no longer singing to herself day and night. She will imitate in speech, but the constant noise is gone. That is something we didn't expect. She is also IN LOVE with music. She listens to it and dances again. She hasn't done that in at least a year, (since she lost a bunch more hearing), and she is still experimenting with new sounds. She excited each time she hears something new.
Monday, November 24, 2008
Second hook-up appointment
We had our second activation appointment today. Miss Kat had made it all the way to full volume on program 6. She was doing very well, and the audiologist said today's appointment was about "fine tuning".
First, we set the T-levels on all the electrodes. Miss Kat had very consistent results across all the frequencies. She was always at 45 or 50 (standard units of measurement...whatever that means!) Then he did the NRI testing. He did most of the electrodes, but not all. He said the results were very good and consistent, exactly what he wanted.
It was a very short appointment. We were done in just over an hour. We set Miss Kat's "optimum MAP". It is on our P-3. She is now using the HiRes Fidelity 120. We are very excited. She seems to really like it. Her reactions are much better than yesterday.
We also dealt with the problem of it being too loud first thing in the morning. The audiologist set the dial to be a bigger variation. Now when it is turned all the way down, the volume will be at 50% instead of only 20% quieter. We hope this will help with the transition to sound.
The last thing we did was try to figure out why Miss Kat was getting the red light blinking. We thought that it was the connection problem because of her super thick hair. So, the audiologist brought in a big magnet and put it on the headpiece and we watched. It still continued to happen. Next we tried switching out the headpiece. It continued. The audiologist decided that it must be the processor! He said that he had never had a Harmony come out of the box bad, we get to be the first! He is sending it back to Advanced Bionics and they are sending us a brand new one (not a refurbished).
After the appointment we headed to Miss Kat's school to (show off and) explain to her teacher about the equipment. She was so excited and she kept wanting to sit next to M, who also has a CI. She kept saying that the two of them have the same (implant) and that they are friends. It is so sweet! She decided that she wanted to stay at school rather than go home with boring old Mom and Dad.
After school Miss Kat rides the bus home with 4 other Deaf students. The driver knows no ASL and the kids are often out of their seats and horsing around when he pulls up to our house. Today when Miss Kat got off the bus her processor was off her ear and the headpiece was off her head. I have no idea how long she was without sound! Also, the headpiece cap was missing. I'm so pissed. I feel like this guy can not be responsible for Miss Kat's equipment. If he can't even keep the kids in seat belts, how is he going to make sure that she keeps almost $10,000 on her ear? Ugh. Is there anything I can do about this??
First, we set the T-levels on all the electrodes. Miss Kat had very consistent results across all the frequencies. She was always at 45 or 50 (standard units of measurement...whatever that means!) Then he did the NRI testing. He did most of the electrodes, but not all. He said the results were very good and consistent, exactly what he wanted.
It was a very short appointment. We were done in just over an hour. We set Miss Kat's "optimum MAP". It is on our P-3. She is now using the HiRes Fidelity 120. We are very excited. She seems to really like it. Her reactions are much better than yesterday.
We also dealt with the problem of it being too loud first thing in the morning. The audiologist set the dial to be a bigger variation. Now when it is turned all the way down, the volume will be at 50% instead of only 20% quieter. We hope this will help with the transition to sound.
The last thing we did was try to figure out why Miss Kat was getting the red light blinking. We thought that it was the connection problem because of her super thick hair. So, the audiologist brought in a big magnet and put it on the headpiece and we watched. It still continued to happen. Next we tried switching out the headpiece. It continued. The audiologist decided that it must be the processor! He said that he had never had a Harmony come out of the box bad, we get to be the first! He is sending it back to Advanced Bionics and they are sending us a brand new one (not a refurbished).
After the appointment we headed to Miss Kat's school to (show off and) explain to her teacher about the equipment. She was so excited and she kept wanting to sit next to M, who also has a CI. She kept saying that the two of them have the same (implant) and that they are friends. It is so sweet! She decided that she wanted to stay at school rather than go home with boring old Mom and Dad.
After school Miss Kat rides the bus home with 4 other Deaf students. The driver knows no ASL and the kids are often out of their seats and horsing around when he pulls up to our house. Today when Miss Kat got off the bus her processor was off her ear and the headpiece was off her head. I have no idea how long she was without sound! Also, the headpiece cap was missing. I'm so pissed. I feel like this guy can not be responsible for Miss Kat's equipment. If he can't even keep the kids in seat belts, how is he going to make sure that she keeps almost $10,000 on her ear? Ugh. Is there anything I can do about this??
Sunday
Wow, things change fast and sometimes not for the better. Miss Kat is tired and unhappy. She has done nothing all day except lay around and watch movies. She refused to go to church and see her best friends (something that she LOVES to do) and she screamed and yelled and wouldn't even consider going with Nana to visit Grandma (another of her favorite activities). She would just complain about everything being too loud.
On one good note, Miss Kat was laying on the couch and she told us she wanted to take her hearing aid out. She left her CI on and just used it for several hours! I can't believe she is already so ok with it! I heard that it takes a long time to adjust and that some kids hate isolating the CI (because the hearing aid is so familiar). I'm glad Miss Kat is already so flexible about it!
On one good note, Miss Kat was laying on the couch and she told us she wanted to take her hearing aid out. She left her CI on and just used it for several hours! I can't believe she is already so ok with it! I heard that it takes a long time to adjust and that some kids hate isolating the CI (because the hearing aid is so familiar). I'm glad Miss Kat is already so flexible about it!
Sunday, November 23, 2008
Day 2
When we put Miss Kat's processor first thing in the morning, she cried again. She told us it was too loud. She got over it in just a minute again. I hope that doesn't last forever.
In the afternoon we headed to the craft store to get some "bling" for Miss Kat's Dri and Store. We fancied it up by writing her name in jewels and put little crystal hearts all over it. It is insanely gaudy now, any 5 year old would love it!!!
While we were at the store we continued to work on listening with Miss Kat. We found tons of bells and tinkling toys for her to listen to. By the end of our trip Miss Kat was starting to respond to her name again. Thank God! Just the one day she wasn't able to was horrible. We had to go back to clapping to have her turn to look at us. I had forgotten how annoying that was.
We started having some technical issues in the afternoon. Miss Kat's processor has a green LED light that blinks when it is connected and sending sound to the implant well. Starting in the afternoon we would occasionally blink red. That meant that it wasn't connecting to the internal device. I tried to call our audiologist, but it was Saturday. I even tried to call Advanced Bionics, but they were closed too. I called another parent with 2 kids with AB implants and posted my question on CiCircle. We tried changing out the headpiece, and that didn't stop it. I finally figured out that it was because her hair was pulled back in a ponytail, and it was too thick. When we moved the hair out of the way, it stopped. Later we started having some trouble with the new headpiece. It would be in place and then just suddenly go completely red. We would have to take the battery off and "reboot" the system. It happened several times. I hope this is a faulty headpiece, and not normal. I would hate to have to do that over and over everyday.
In the evening Miss Kat found a buzzer from the game Taboo. She loved buzzing it. She would go in the other room and make us all listen for the buzzing and then raise our hands when we heard it. (Ummm, perhaps she has done this before...)Then later on she watched the movie Fantasia. She was entranced. She loved the music. It was amazing to watch her green light blink right along with the music.
Besides recognizing her name we also have seen Miss Kat understand and respond to the words "where", "movie", "milk", and "more". Not too shabby for two day old ears!
In the afternoon we headed to the craft store to get some "bling" for Miss Kat's Dri and Store. We fancied it up by writing her name in jewels and put little crystal hearts all over it. It is insanely gaudy now, any 5 year old would love it!!!
While we were at the store we continued to work on listening with Miss Kat. We found tons of bells and tinkling toys for her to listen to. By the end of our trip Miss Kat was starting to respond to her name again. Thank God! Just the one day she wasn't able to was horrible. We had to go back to clapping to have her turn to look at us. I had forgotten how annoying that was.
We started having some technical issues in the afternoon. Miss Kat's processor has a green LED light that blinks when it is connected and sending sound to the implant well. Starting in the afternoon we would occasionally blink red. That meant that it wasn't connecting to the internal device. I tried to call our audiologist, but it was Saturday. I even tried to call Advanced Bionics, but they were closed too. I called another parent with 2 kids with AB implants and posted my question on CiCircle. We tried changing out the headpiece, and that didn't stop it. I finally figured out that it was because her hair was pulled back in a ponytail, and it was too thick. When we moved the hair out of the way, it stopped. Later we started having some trouble with the new headpiece. It would be in place and then just suddenly go completely red. We would have to take the battery off and "reboot" the system. It happened several times. I hope this is a faulty headpiece, and not normal. I would hate to have to do that over and over everyday.
In the evening Miss Kat found a buzzer from the game Taboo. She loved buzzing it. She would go in the other room and make us all listen for the buzzing and then raise our hands when we heard it. (Ummm, perhaps she has done this before...)Then later on she watched the movie Fantasia. She was entranced. She loved the music. It was amazing to watch her green light blink right along with the music.
Besides recognizing her name we also have seen Miss Kat understand and respond to the words "where", "movie", "milk", and "more". Not too shabby for two day old ears!
The rest of that first day
As we left the audiologist's office Miss Kat was still very unhappy. She was leaving the processor alone but she didn't want us to talk or even make much noise. So we loaded up and head home.
We stopped an hour from home at Nana's (Hubby's mom) for lunch. Miss Kat was so proud of her implant (all of a sudden!) Nana took her all around the office and showed Miss Kat off. We headed over to get lunch and Miss Kat had to go potty. The audiologist had warned us that toilet flushing is something that is often very scary to newly implanted children. So, as I left her in the bathroom, I warned her about the flushing. When she came out she was so excited! She told us she heard the toilet flush. That was the moment everything changed...
Miss Kat suddenly started to be totally interested in all the sound around her. She heard the doors hit each other, she started to knocking on every surface she could find. She heard her feet on the ground, she even heard the ice in her drink!!
After lunch we headed over to the Treehouse Museum (http://www.treehousemuseum.org/home.html) and played. We went over to the music section and played the instruments and she loved it. We were able to slowly turn her volume up and when the headpiece fell off she immediately walked over and asked us to put it on (after she tried herself a couple times).
After a long drive home, we went and visited Grammy (my mom). Miss Kat was very excited to show off her processor again. Grammy has a little toy guitar and keyboard so she pulled them out and Miss Kat started to play with them. Normally, she just bangs around on them and then moves on. This time playing with it was very different. She very slowly played each note and listened very carefully. She was very interested and was noticing the differences in pitch. It was incredible to watch!
Miss Kat wore her implant every waking moment from the time she was activated. She made it through all three programs on her processor that first day. We are already blown away by her progress. It feels so meant to be!
We stopped an hour from home at Nana's (Hubby's mom) for lunch. Miss Kat was so proud of her implant (all of a sudden!) Nana took her all around the office and showed Miss Kat off. We headed over to get lunch and Miss Kat had to go potty. The audiologist had warned us that toilet flushing is something that is often very scary to newly implanted children. So, as I left her in the bathroom, I warned her about the flushing. When she came out she was so excited! She told us she heard the toilet flush. That was the moment everything changed...
Miss Kat suddenly started to be totally interested in all the sound around her. She heard the doors hit each other, she started to knocking on every surface she could find. She heard her feet on the ground, she even heard the ice in her drink!!
After lunch we headed over to the Treehouse Museum (http://www.treehousemuseum.org/home.html) and played. We went over to the music section and played the instruments and she loved it. We were able to slowly turn her volume up and when the headpiece fell off she immediately walked over and asked us to put it on (after she tried herself a couple times).
After a long drive home, we went and visited Grammy (my mom). Miss Kat was very excited to show off her processor again. Grammy has a little toy guitar and keyboard so she pulled them out and Miss Kat started to play with them. Normally, she just bangs around on them and then moves on. This time playing with it was very different. She very slowly played each note and listened very carefully. She was very interested and was noticing the differences in pitch. It was incredible to watch!
Miss Kat wore her implant every waking moment from the time she was activated. She made it through all three programs on her processor that first day. We are already blown away by her progress. It feels so meant to be!
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