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!
*ACTIVATION*
Our appointment for activation was at 9 am, two hours away, so our day started very early. Miss Kat is not the kind of kid who sleeps in the car so we bought WALL-E for the trip. She loves the movie because she understands exactly what is going on...very little dialogue. So we loaded everyone up and we headed out for our great adventure.
When we arrive our audiologist takes us down into the little sound booth and sets everything up and connects Miss Kat's implant for the first time. He tells us that the manufacturer has a program that can set the T-levels for us, and very quickly, but he doesn't like to do it that way. He said that he wants to make sure that the MAP is exactly right for her, and while it takes extra time, it is worth it. (And THAT is why we drive two hours to see him, rather than the several that are within minutes of our house)
So we begin with beeps. Miss Kat is ready to press her button and make the pictures pop up. On the first electrode she reacts clearly at 70 (standard units) and hits the button. We are all so excited. She is doing great. The audiologist moves on to the next electrode. 70...80...100...140...still nothing. We ask Miss Kat if she hears anything, she says no. The audiologist starts to wonder if she really didn't hear at 70 last time, maybe she was just guessing. He starts to play 140 again, and then I stop him. I had been watching Miss Kat and noticed (as only mothers can) a clear reaction. Every time the beeps started she would pause for just a second and then look up at the audiologist. She was hearing. She just didn't recognize it! I had them play the beeps again, loud enough that I was sure she could hear them, and when she paused and looked up I signed "Hear that, that is hearing now!" She could hear the sound but it was so different that she wouldn't label it as hearing!
So now we had the T-levels set (so we know the quietest she can hear), but next we need to know what is too loud for her. The audiologist goes live and we start to make sounds. Miss Kat seems unimpressed overall but is being pretty patient. The audiologist taps his ring on the table, a nice annoying sound, and Miss Kat looks, but doesn't care. He also has a container of toy cars and he shakes them nice and loud. Still ok. He continues to turn her up, and make the same noises until...BOOM, he turns the processor off and then back on and Miss Kat screams. He turns it back off, and Miss Kat crawls into Daddy's lap. We found too loud.
Using the information he has gathered, the audiologist sets 6 programs for us to work through over the week-end. He turns Miss Kat back on, with a lower setting, and she bursts into tears again. She is obviously still upset, but it is very different from the too lous MAP. She quickly calms down. I ask her if she likes her new implants and she tells me "No". My poor baby.
Overall, activation went very well. Miss Kat was very patient and responded very well. She never tried to take the processor off, and seemed to react to sound very quickly. I'm so proud of her. She is a brave girl.
When we arrive our audiologist takes us down into the little sound booth and sets everything up and connects Miss Kat's implant for the first time. He tells us that the manufacturer has a program that can set the T-levels for us, and very quickly, but he doesn't like to do it that way. He said that he wants to make sure that the MAP is exactly right for her, and while it takes extra time, it is worth it. (And THAT is why we drive two hours to see him, rather than the several that are within minutes of our house)
So we begin with beeps. Miss Kat is ready to press her button and make the pictures pop up. On the first electrode she reacts clearly at 70 (standard units) and hits the button. We are all so excited. She is doing great. The audiologist moves on to the next electrode. 70...80...100...140...still nothing. We ask Miss Kat if she hears anything, she says no. The audiologist starts to wonder if she really didn't hear at 70 last time, maybe she was just guessing. He starts to play 140 again, and then I stop him. I had been watching Miss Kat and noticed (as only mothers can) a clear reaction. Every time the beeps started she would pause for just a second and then look up at the audiologist. She was hearing. She just didn't recognize it! I had them play the beeps again, loud enough that I was sure she could hear them, and when she paused and looked up I signed "Hear that, that is hearing now!" She could hear the sound but it was so different that she wouldn't label it as hearing!
So now we had the T-levels set (so we know the quietest she can hear), but next we need to know what is too loud for her. The audiologist goes live and we start to make sounds. Miss Kat seems unimpressed overall but is being pretty patient. The audiologist taps his ring on the table, a nice annoying sound, and Miss Kat looks, but doesn't care. He also has a container of toy cars and he shakes them nice and loud. Still ok. He continues to turn her up, and make the same noises until...BOOM, he turns the processor off and then back on and Miss Kat screams. He turns it back off, and Miss Kat crawls into Daddy's lap. We found too loud.
Using the information he has gathered, the audiologist sets 6 programs for us to work through over the week-end. He turns Miss Kat back on, with a lower setting, and she bursts into tears again. She is obviously still upset, but it is very different from the too lous MAP. She quickly calms down. I ask her if she likes her new implants and she tells me "No". My poor baby.
Overall, activation went very well. Miss Kat was very patient and responded very well. She never tried to take the processor off, and seemed to react to sound very quickly. I'm so proud of her. She is a brave girl.
Thursday, November 20, 2008
Post-op
Today was the post-op appointment with Miss Kat's surgeon. Hubby and I were terrified!
The surgeon is very conservative and does NOT activate before 4 weeks. We had a scheduling conflict because we are going to have to be in court the first two weeks of December, starting on the 2nd. They had originally scheduled post op for Dec. 3rd and activation for the next day. When I spoke to the scheduler and explained that we needed to move it up just a few days, she said "No way.", because Thanksgiving was the week before and that would bump us all the way back to Wednesday, and therefore it would be just barely over 3 weeks after surgery. We asked what we could do, and she said we could ask at the pre-op appointment, but that the surgeon always says the longer the better. He says "6 weeks is better than 3". Ugh!
At the pre-op appointment I explained to him that hubby and I will be in court the first two weeks of December and that we wanted to get Miss Kat activated before Dec. 2 so that we did not have to wait until after Christmas. He was feeling guilty about cancelling our surgery date, so he said "No problem. Just make an appointment at the desk". Then he wrote on the little paper for the receptionist "3-4 weeks later". When the secretary saw the paper she was surprised, she said "What did you say? He NEVER does it in less then 4 weeks!" So, the receptionist is searching for a post-op appointment and asks if Dec. 3rd is OK, I say no we need before Thanksgiving. So, she gives us today's appointment. It is only 16 days after surgery!!!
SO, we showed up today on pins and needles. Miss Kat is healing amazingly well, so we felt like she was ready for activation. We hoped that if the surgeon looked at her, instead of the date, that he would give us the go ahead. After over an hour of waiting, the doctor came into to look at Miss Kat. He asked how everything went, and we told him that she was jumping on the bed the next day (but we were trying to stop her!) and that she was off the medicine by the next morning too (she hated the taste!). He starts looking at the healing incision and kinda mumbles "Hmmm" and then he says he needs a light. Hubby and I start to really freak out! He seems to be worried about something, and is looking really close. He turns back and says "She has a little scab at the top. Feel free to wash it and try to get that off." And then "She looks great. Take this paper and set up activation with the audiologist"!
Little did he know that we set up activation a month ago, and it is tomorrow morning! We have to leave at 7 am and drive two hours, but our audiologist is the best. He called today and told me that he has the battery charging! He told me that he has two processors for us, and will set us up with 6 MAPs. Also, we have another MAPing on Monday. We are so ready. The gas tank is full and the camera is charging!
Tomorrow our bionic girl goes on-line.
The surgeon is very conservative and does NOT activate before 4 weeks. We had a scheduling conflict because we are going to have to be in court the first two weeks of December, starting on the 2nd. They had originally scheduled post op for Dec. 3rd and activation for the next day. When I spoke to the scheduler and explained that we needed to move it up just a few days, she said "No way.", because Thanksgiving was the week before and that would bump us all the way back to Wednesday, and therefore it would be just barely over 3 weeks after surgery. We asked what we could do, and she said we could ask at the pre-op appointment, but that the surgeon always says the longer the better. He says "6 weeks is better than 3". Ugh!
At the pre-op appointment I explained to him that hubby and I will be in court the first two weeks of December and that we wanted to get Miss Kat activated before Dec. 2 so that we did not have to wait until after Christmas. He was feeling guilty about cancelling our surgery date, so he said "No problem. Just make an appointment at the desk". Then he wrote on the little paper for the receptionist "3-4 weeks later". When the secretary saw the paper she was surprised, she said "What did you say? He NEVER does it in less then 4 weeks!" So, the receptionist is searching for a post-op appointment and asks if Dec. 3rd is OK, I say no we need before Thanksgiving. So, she gives us today's appointment. It is only 16 days after surgery!!!
SO, we showed up today on pins and needles. Miss Kat is healing amazingly well, so we felt like she was ready for activation. We hoped that if the surgeon looked at her, instead of the date, that he would give us the go ahead. After over an hour of waiting, the doctor came into to look at Miss Kat. He asked how everything went, and we told him that she was jumping on the bed the next day (but we were trying to stop her!) and that she was off the medicine by the next morning too (she hated the taste!). He starts looking at the healing incision and kinda mumbles "Hmmm" and then he says he needs a light. Hubby and I start to really freak out! He seems to be worried about something, and is looking really close. He turns back and says "She has a little scab at the top. Feel free to wash it and try to get that off." And then "She looks great. Take this paper and set up activation with the audiologist"!
Little did he know that we set up activation a month ago, and it is tomorrow morning! We have to leave at 7 am and drive two hours, but our audiologist is the best. He called today and told me that he has the battery charging! He told me that he has two processors for us, and will set us up with 6 MAPs. Also, we have another MAPing on Monday. We are so ready. The gas tank is full and the camera is charging!
Tomorrow our bionic girl goes on-line.
Monday, November 10, 2008
OH THE HUMANITY!
Today was day seven after surgery so it was time to remove the steri-strips and give Miss Kat a bath. We wanted to get that old crusty blood off and wash her hair. They were starting to peel off so we wet them and tried to ease them off. It didn't work. We decided to just pull the tape off like a band-aid.....BIG mistake! It hurt Miss Kat a little and it started to bleed! I started to get faint and I really freaked out. I called the ENT and he obviously thought I was an idiot. He said if it was gushing blood or kept bleeding for an hour we should come in. I said "An hour?!?!" He also scolded us and said we should have left the tape until it peeled itself off. Oops! The paper said to leave it on for seven days. I feel awful for Miss Kat, and now I'm terribly worried that something bad is going to happen to the incision (I'm paranoid because my c-section incision reopened after Miss Kat was delivered. It was one of the most horrible experiences in my life. I still get shaky when I think about it too much.)
I also got my first good look at the actual incision. I was still freaked out by the earlier incident and I got really freaked out. It looks like the surgeon cut her ear off! I guess, logically, I know he didn't, but it was still so icky. I'm trying hard to regain my composure, but it has been hard.
I also got my first good look at the actual incision. I was still freaked out by the earlier incident and I got really freaked out. It looks like the surgeon cut her ear off! I guess, logically, I know he didn't, but it was still so icky. I'm trying hard to regain my composure, but it has been hard.
Friday, November 7, 2008
Speech with one hearing aid
Miss Kat had her first speech appointment since surgery. She only had one hearing aid. It did not go well. Poor baby. She tried so hard, but she was just doing terrible. She went from being able to distinguish 6 phrases at 100% to missing some of the Ling sounds! The therapist said that she has never seen such a profound difference. She said that Miss Kat must have been absolutely maxing out her hearing aids. We have noticed that she isn't responding as well to sounds, especially her name. During speech the therapist also noted that Miss Kat has been very quiet as well. She wasn't copying or attempting to vocalize the words very much at all. We made sure that therapy wasn't frustrating at all, just keeping her in the habit while we wait for activation.
Also, Miss Kat's recovery has been going great! We went to a Deaf community activity tonight, and she played like a maniac...back to normal! People are really surprised how great her incision looks (you can't even see it when her hair is in a ponytail!) and that she is up and monkeying around so soon. We also stuck a magnet to her head to show the other kids where her implant is. They thought it was cool. It comes off really easily though, I hope the CI stays better.
Also, Miss Kat's recovery has been going great! We went to a Deaf community activity tonight, and she played like a maniac...back to normal! People are really surprised how great her incision looks (you can't even see it when her hair is in a ponytail!) and that she is up and monkeying around so soon. We also stuck a magnet to her head to show the other kids where her implant is. They thought it was cool. It comes off really easily though, I hope the CI stays better.
Tuesday, November 4, 2008
The next day
Miss Kat is doing well. Daddy took off her bandage. He said I should be happy that I wasn't there for it, he got a little sick!
The incision looks great (to me). There is no swelling, no redness, no bleeding, no oozing. It is a little bigger than average, and the surgeon shaved more hair than was really necessary. I think it looks great. I also can't even see where the implant itself is! He must have set it into the skull really well.
Miss Kat is up and playing. She is still taking her pain meds regularly, but she is happy!
The incision looks great (to me). There is no swelling, no redness, no bleeding, no oozing. It is a little bigger than average, and the surgeon shaved more hair than was really necessary. I think it looks great. I also can't even see where the implant itself is! He must have set it into the skull really well.
Miss Kat is up and playing. She is still taking her pain meds regularly, but she is happy!
Monday, November 3, 2008
At home
As soon as we were in the car we gave Miss Kat her first dose of pain meds. She really hates the bandage on her head. I think she has shooting pains occasionally, because she will suddenly cry out and grab her ear. I also think that she believes the bandage is causing the pain...poor baby.
When we got home Miss Kat ate two goldfish crackers and we all laid down to take a nap. She slept for about two hours. When she woke up she was almost totally back to regular self. She is still a little subdued, but she is so much cheerer. She ate a cheese quesadilla for dinner and then watched a little Curious George. She fell asleep in our bed about 730. Daddy is asleep on the couch right now as I type this too.
Tomorrow the bandage comes off and I have to face the incision. I also have to go to work, but Daddy will be here with her. We have decided to keep her home all week, so each family member is taking a day off. I have Thursday.
Oh, and the saddest thing happened, as a ploy to get us to take her bandage off, Miss Kat said that if she went to school with it on tomorrow, all the kids would make fun of her. Ahhh, poor baby! It isn't true, the kids are sweethearts and would never be mean like that, AND she isn't going to school for awhile, but isn't that a sad little thought for her to have? It broke my heart!
When we got home Miss Kat ate two goldfish crackers and we all laid down to take a nap. She slept for about two hours. When she woke up she was almost totally back to regular self. She is still a little subdued, but she is so much cheerer. She ate a cheese quesadilla for dinner and then watched a little Curious George. She fell asleep in our bed about 730. Daddy is asleep on the couch right now as I type this too.
Tomorrow the bandage comes off and I have to face the incision. I also have to go to work, but Daddy will be here with her. We have decided to keep her home all week, so each family member is taking a day off. I have Thursday.
Oh, and the saddest thing happened, as a ploy to get us to take her bandage off, Miss Kat said that if she went to school with it on tomorrow, all the kids would make fun of her. Ahhh, poor baby! It isn't true, the kids are sweethearts and would never be mean like that, AND she isn't going to school for awhile, but isn't that a sad little thought for her to have? It broke my heart!
Surgery
We woke up bright and early this morning, we had to be at the hospital at 530 am. Miss Kat was very tired and pretty cranky. She really didn't want to put on the hospital gown, she thought we were trying to put it on her backwards! She was fairly cooperative otherwise.
At about 7, they brought her Versed. I can not sing the praises of that liquid enough! She started giggling and was so silly. She started playing with her own lips and laughing about nothing! The anesthesiologist came in and explained everything that would happen. She got all ready and brought Bunny with her into surgery.
After about an hour I received a call in the waiting room updating us. The whole staff was so impressed by how prepared Miss Kat was for surgery. They said that the moment she got back into the operating room she hopped off the bed and onto the table. Next, the doctor showed her the pulse ox and she held out her finger for him. Then she looked around and found the mask and laiddown, put it over her mouth and started to breath deeply. What a smarty!
As soon as she was out of surgery, and her tube was pulled, they came and got me. They said that they never let parents pack in the PACU, but that since she signs they need me to help with questions. Wow, I'm glad! I didn't want her to have to wake up alone. When I got back there she looked better than I expected. She wasn't swollen or bruised, two things I had been warned about. She was itchy though, her pain meds make her eyes and nose itch. She has been rubbing her eye all day. She was coming in and out of consciousness the whole time we were back there. They asked her if she was hurting and she said no, but that she wanted another pillow. As soon as she realized I was there she started to ask for me to hold her, it was so sweet and sad at the same time. She wanted to crawl into my arms, but she couldn't. She settled for me hugging her and her wrapping her little arms around me.
When she started to really wake up it was time to move to the recovery room. I told her we were headed to a different room and she started to gather all her stuff to get up and leave! I told her to stay on the bed, that they would take her...silly girl! As we were going down the hall we stopped off at the waiting room to pick up Daddy and Grammy. When Miss Kat saw me go in to the other room she started to get up to come too (what are we going to do with her??).
On the way to the recovery room Miss Kat asked for her Popsicle and a soda (she remembered from the tour!) She drank and ate, and then napped a little. She really didn't like the IV and the cords and bandages. She was feeling ok so we got out of there as quick as we could. She ended up throwing up just a little, and we figure that was because of dizziness from getting up and changing clothes.
Miss Kat is now a bionic girl.
At about 7, they brought her Versed. I can not sing the praises of that liquid enough! She started giggling and was so silly. She started playing with her own lips and laughing about nothing! The anesthesiologist came in and explained everything that would happen. She got all ready and brought Bunny with her into surgery.
After about an hour I received a call in the waiting room updating us. The whole staff was so impressed by how prepared Miss Kat was for surgery. They said that the moment she got back into the operating room she hopped off the bed and onto the table. Next, the doctor showed her the pulse ox and she held out her finger for him. Then she looked around and found the mask and laiddown, put it over her mouth and started to breath deeply. What a smarty!
As soon as she was out of surgery, and her tube was pulled, they came and got me. They said that they never let parents pack in the PACU, but that since she signs they need me to help with questions. Wow, I'm glad! I didn't want her to have to wake up alone. When I got back there she looked better than I expected. She wasn't swollen or bruised, two things I had been warned about. She was itchy though, her pain meds make her eyes and nose itch. She has been rubbing her eye all day. She was coming in and out of consciousness the whole time we were back there. They asked her if she was hurting and she said no, but that she wanted another pillow. As soon as she realized I was there she started to ask for me to hold her, it was so sweet and sad at the same time. She wanted to crawl into my arms, but she couldn't. She settled for me hugging her and her wrapping her little arms around me.
When she started to really wake up it was time to move to the recovery room. I told her we were headed to a different room and she started to gather all her stuff to get up and leave! I told her to stay on the bed, that they would take her...silly girl! As we were going down the hall we stopped off at the waiting room to pick up Daddy and Grammy. When Miss Kat saw me go in to the other room she started to get up to come too (what are we going to do with her??).
On the way to the recovery room Miss Kat asked for her Popsicle and a soda (she remembered from the tour!) She drank and ate, and then napped a little. She really didn't like the IV and the cords and bandages. She was feeling ok so we got out of there as quick as we could. She ended up throwing up just a little, and we figure that was because of dizziness from getting up and changing clothes.
Miss Kat is now a bionic girl.
Sunday, November 2, 2008
Tomorrow
Surgery is tomorrow. We have to be at the hospital at 5:30 a.m. That is crazy early but at least Miss Kat won't be jumping off the walls while we are waiting. We are packing tonight, braiding her hair tight (so the surgeon will hopefully shave less), and then we will be ready.
The fear hasn't really hit me yet.
The fear hasn't really hit me yet.
Sound and Fury
Our family has been watching the movie "Sound and Fury" this week. I also watched the follow up, but we couldn't get a hold of it to show the rest of the family.
I liked the movie, but I thought it showed the two most extreme viewpoints. I felt like no one was in the middle ground. I hated that they kept throwing around the word "abuse" and "not accepting". And the hearing grandmother just drove me crazy. She was pushing so hard, and just attacking all the time. I felt like she really believed that a child can not succeed with out a CI. I don't believe that. I believe that a CI gives a child more opportunities, but it is not necessary.
My mother was on the other side. She thought the grandmother had really good points. She thought that the parents were not thinking about their children's future. She thought that they were not implanting out of fear, and that they moved to Maryland to get away from the whole issue. I thought that the school was wonderful, it reminded me of Miss Kat's school. My mother and I have always argued about the idea of "birth defect" versus "culture". I explained that I hate the idea of people believing that a CI is a cure, and so many people in the movie viewed it that way, especially the hearing parents.
I also didn't like that the parents said that their child is now hearing, that simply wasn't true. I argued with my mother about that. She said that not everyone views it the same way as we do. She said that they found out their child had a handicap and corrected it. She compared it to a club foot. She said they found it, had surgery to correct it, and then gave their child therapy to help them learn to walk appropriately. But, I pointed out that the child doesn't continue to have to wear the device, and that when they take it off they don't still have the "issue". I compared it to an amputee. You can give your child prosthetics, but then you don't tell them "You are able-bodied now, just like everyone else." It just isn't true.
I also had a epiphany about the whole "ASL is a crutch for deaf children". I think that if my child had a limp, I would give them a crutch! I wouldn't force them to hobble around in pain. Maybe that makes me a bad mother...oh well!
I liked the movie, but I thought it showed the two most extreme viewpoints. I felt like no one was in the middle ground. I hated that they kept throwing around the word "abuse" and "not accepting". And the hearing grandmother just drove me crazy. She was pushing so hard, and just attacking all the time. I felt like she really believed that a child can not succeed with out a CI. I don't believe that. I believe that a CI gives a child more opportunities, but it is not necessary.
My mother was on the other side. She thought the grandmother had really good points. She thought that the parents were not thinking about their children's future. She thought that they were not implanting out of fear, and that they moved to Maryland to get away from the whole issue. I thought that the school was wonderful, it reminded me of Miss Kat's school. My mother and I have always argued about the idea of "birth defect" versus "culture". I explained that I hate the idea of people believing that a CI is a cure, and so many people in the movie viewed it that way, especially the hearing parents.
I also didn't like that the parents said that their child is now hearing, that simply wasn't true. I argued with my mother about that. She said that not everyone views it the same way as we do. She said that they found out their child had a handicap and corrected it. She compared it to a club foot. She said they found it, had surgery to correct it, and then gave their child therapy to help them learn to walk appropriately. But, I pointed out that the child doesn't continue to have to wear the device, and that when they take it off they don't still have the "issue". I compared it to an amputee. You can give your child prosthetics, but then you don't tell them "You are able-bodied now, just like everyone else." It just isn't true.
I also had a epiphany about the whole "ASL is a crutch for deaf children". I think that if my child had a limp, I would give them a crutch! I wouldn't force them to hobble around in pain. Maybe that makes me a bad mother...oh well!
Friday, October 31, 2008
Pre-op
We had Miss Kat's pre-op appointment yesterday. It took forever! We got our prescriptions and an envelope that they said was her "ticket into surgery". The hospital will call today to tell us what time to be there on Monday.
We also got our post-op appointment moved a little bit earlier than expected. The surgeon generally is very strict about waiting a full 4 weeks. I explained our situation and said we needed to have her activated by Dec. 1. He said "No problem"! I was shocked! Our post op is set for Nov. 20 and activation will be Nov. 21 and 24. We are still terrified though. We are so worried that he will look at her appointment and say "No way. This is way too early". It is only 17 days post surgery, and he likes at least 30. We are worried our whole activation will get cancelled again at the last minute. Ugh, like we need another thing to worry about right now.
Tonight is Trick or Treating, then we have Miss Kat's best friend's birthday, and then we pack up to go to the hospital!
We also got our post-op appointment moved a little bit earlier than expected. The surgeon generally is very strict about waiting a full 4 weeks. I explained our situation and said we needed to have her activated by Dec. 1. He said "No problem"! I was shocked! Our post op is set for Nov. 20 and activation will be Nov. 21 and 24. We are still terrified though. We are so worried that he will look at her appointment and say "No way. This is way too early". It is only 17 days post surgery, and he likes at least 30. We are worried our whole activation will get cancelled again at the last minute. Ugh, like we need another thing to worry about right now.
Tonight is Trick or Treating, then we have Miss Kat's best friend's birthday, and then we pack up to go to the hospital!
Tuesday, October 28, 2008
The meeting
This morning was the cochlear implant committee meeting. I sat in to make sure than the information being presented was unbiased and accurate.
Miss Kat's audiologist spoke for a minute about her hearing history and audiology. Then they read a statement from our speech therapist (she was unable to attend because of a family issue). It expressed the fact that Miss Kat was motivated and able to progress in her auditory skills and that she fully supports Miss Kat getting an implant. She stated that Miss Kat is "an excellent candidate".
The classroom placement came up very briefly and I read a statement from Miss Kat's teacher. It laid out the services she received at school and the fact that they are fully prepared to support Miss Kat's success in anyway they can. Our audiologist also mentioned that she is in the only placement that is available for her! Another committee member (I have no idea who) said that she can either be at her school and educated, or in a corner alone in an oral class! I also told them that if Miss Kat shows improvement and becomes an oral language user, we are more than willing to look into a change of placement.
After that the surgeon just looked around and asked if they were all in agreement. Everyone nodded and one guy said "I give her two thumbs up for the implant"! So....it is set! Surgery is Monday!!!
We are headed out right now to tour the new hospital. (We had to change hospitals because we didn't want to wait until December) I'm so excited. This is going to move very fast now. Her pre-op is Thursday! Then Halloween, then surgery!
Miss Kat's audiologist spoke for a minute about her hearing history and audiology. Then they read a statement from our speech therapist (she was unable to attend because of a family issue). It expressed the fact that Miss Kat was motivated and able to progress in her auditory skills and that she fully supports Miss Kat getting an implant. She stated that Miss Kat is "an excellent candidate".
The classroom placement came up very briefly and I read a statement from Miss Kat's teacher. It laid out the services she received at school and the fact that they are fully prepared to support Miss Kat's success in anyway they can. Our audiologist also mentioned that she is in the only placement that is available for her! Another committee member (I have no idea who) said that she can either be at her school and educated, or in a corner alone in an oral class! I also told them that if Miss Kat shows improvement and becomes an oral language user, we are more than willing to look into a change of placement.
After that the surgeon just looked around and asked if they were all in agreement. Everyone nodded and one guy said "I give her two thumbs up for the implant"! So....it is set! Surgery is Monday!!!
We are headed out right now to tour the new hospital. (We had to change hospitals because we didn't want to wait until December) I'm so excited. This is going to move very fast now. Her pre-op is Thursday! Then Halloween, then surgery!
Wednesday, October 22, 2008
Miss Kat's Pre-Op Spoken Language
Receptive No! Katrina Daddy Mama Ball Shoes Thank you Meow Baby Cookie Hamburger Hot dog Ice cream cone Airplane Uh-oh Ouch I love you Garbage Mouse Monkey Movie More Ready Fish Finished Horse Red Blue Yellow Green Orange Purple Cat Doggy Candy Cheese Off Apple | Expressive Oh NO! You Mine Baby Ball Daddy Mama Doggie More Movie Monkey Red Blue Green Yellow Orange Brown One Two Ready Wow Ice cream Shoes Me Cow Poop Help me Thank you Meow Cookie Candy Owie Apple Mad Birthday |
Tuesday, October 14, 2008
The phone call
Monday, October 6th at around 3:30 in the afternoon I received a phone call from the ENT. They were calling to cancel Miss Kat's surgery. The surgeon was concerned because their was a disagreement between audiologists. He said that since our former audiologist was a member of the CI Center's implant committee she needed to be on board with the surgery.
As soon as we found this out we drove to see the audiologist. We told her that our surgery had been cancelled because of her objections. We went back to her little room and told her what was going on. We told her that many things had changed since she had last seen Miss Kat. She just kept repeating that she had no new information and that what she knew of Miss Kat made her a bad implant candidate. We asked specifically what her concerns were. She mentioned that she thought that her speech skills were underdeveloped, that she thought her school placement was inappropriate, and that she thought that Miss Kat wouldn't be getting therapy. When we tried to explain the truth, she just cut us off and kept saying that she wasn't informed of that.
My husband and I became very frustrated, We were trying to explain the situation and the changes, but she just didn't care. She repeated over and over that she didn't know what was going on and that they would have a meeting, and that we should just wait and see what happens in the meeting. She kept saying "I'm just one vote, so even if I say no..." I asked why she was against it and she said that she thought they "needed to be implanting responsibly". I told her that there were tons of centers that implanted pre-lingually deaf signers and she indicated that she thought they shouldn't be.
Eventually the conversation deteriorated and I left in a huff. I was so hurt and outraged that this woman wanted to deny my child the gift of hearing. She just kept saying "It can wait", she even went so far as to say "You waited 5 years, a few more weeks won't matter". That is when I lost it. I told her that was blatantly untrue. I told her that the moment that Miss Kat's hearing loss became severe that I was in that office asking for information about an implant. I said "Don't you dare imply that we don't want this. I was here the second she was eligible." I told her that Miss Kat's loss was progressive and that she has NOT been deaf since birth and that she has only been unable to effectively use aids for a few months. She is not a classic, pre-lingually severe-profoundly deaf child at this age. She has experienced hearing, and listening.
Nothing changed in the meeting, but I am still happy I told her what I thought. I made it clear that I knew she was doing it because Miss Kat signs. I am attending the CI committee meeting, it is October 28th. I want to hear what these people will be saying about my child. I think that my attendance will help make sure it is unbiased.
As soon as we found this out we drove to see the audiologist. We told her that our surgery had been cancelled because of her objections. We went back to her little room and told her what was going on. We told her that many things had changed since she had last seen Miss Kat. She just kept repeating that she had no new information and that what she knew of Miss Kat made her a bad implant candidate. We asked specifically what her concerns were. She mentioned that she thought that her speech skills were underdeveloped, that she thought her school placement was inappropriate, and that she thought that Miss Kat wouldn't be getting therapy. When we tried to explain the truth, she just cut us off and kept saying that she wasn't informed of that.
My husband and I became very frustrated, We were trying to explain the situation and the changes, but she just didn't care. She repeated over and over that she didn't know what was going on and that they would have a meeting, and that we should just wait and see what happens in the meeting. She kept saying "I'm just one vote, so even if I say no..." I asked why she was against it and she said that she thought they "needed to be implanting responsibly". I told her that there were tons of centers that implanted pre-lingually deaf signers and she indicated that she thought they shouldn't be.
Eventually the conversation deteriorated and I left in a huff. I was so hurt and outraged that this woman wanted to deny my child the gift of hearing. She just kept saying "It can wait", she even went so far as to say "You waited 5 years, a few more weeks won't matter". That is when I lost it. I told her that was blatantly untrue. I told her that the moment that Miss Kat's hearing loss became severe that I was in that office asking for information about an implant. I said "Don't you dare imply that we don't want this. I was here the second she was eligible." I told her that Miss Kat's loss was progressive and that she has NOT been deaf since birth and that she has only been unable to effectively use aids for a few months. She is not a classic, pre-lingually severe-profoundly deaf child at this age. She has experienced hearing, and listening.
Nothing changed in the meeting, but I am still happy I told her what I thought. I made it clear that I knew she was doing it because Miss Kat signs. I am attending the CI committee meeting, it is October 28th. I want to hear what these people will be saying about my child. I think that my attendance will help make sure it is unbiased.
Thursday, October 2, 2008
Update
Bunny is up and playing now. She really bounced right back from surgery. The little ones handle it so much better than we grown ups....
Oh, and now that Miss Kat has her surgeons license everyone is our house is getting CI's. The latest patient was her pig. I think the pig must be post-lingually deafen because he oinks like a hearing pig.
Oh, and now that Miss Kat has her surgeons license everyone is our house is getting CI's. The latest patient was her pig. I think the pig must be post-lingually deafen because he oinks like a hearing pig.
Tuesday, September 30, 2008
Preparations for surgery
Today we took the pre-surgery "class" with Miss Kat. They forgot to get her an interpreter, so I had to sign everything, but other than that it went very well. They took her through the entire surgery step by step. They started in the waiting room and showed exactly what she can expect. They even let Miss Kat dress up in gloves and a mask and put an IV in her bunny! She was incredibly excited to find out that she can take her paci into the surgery room and that they have slushies when she wakes up.
We are also doing well. It was nice to see Miss Kat so excited and unafraid about the surgery. It really calms my fears to know that she is prepared. I don't want her waking up after surgery, confused and frighten. I want her to understand exactly what is happening to her. I feel like so much of the information glosses over the actual procedure and just says "You go to sleep and when you wake up, you have a CI!" I think Miss Kat needs to know that they will cut into her head and that when she wakes up there will be something inside her. Sooooo.....
When we got home, we took Miss Kat's "make-a-bear" bunny, and gave it an implant! We all "suited up" and had Nana open Bunny's head and put in a magnet. He is now upstairs in bed with Miss Kat with a big bandage wrapped around his head. He will also have a scar behind his ear forever just like all the other CI kids!
We are also doing well. It was nice to see Miss Kat so excited and unafraid about the surgery. It really calms my fears to know that she is prepared. I don't want her waking up after surgery, confused and frighten. I want her to understand exactly what is happening to her. I feel like so much of the information glosses over the actual procedure and just says "You go to sleep and when you wake up, you have a CI!" I think Miss Kat needs to know that they will cut into her head and that when she wakes up there will be something inside her. Sooooo.....
When we got home, we took Miss Kat's "make-a-bear" bunny, and gave it an implant! We all "suited up" and had Nana open Bunny's head and put in a magnet. He is now upstairs in bed with Miss Kat with a big bandage wrapped around his head. He will also have a scar behind his ear forever just like all the other CI kids!
Wednesday, September 24, 2008
UH-OH!
Miss Kat needs new earmolds. She has started getting little sores in her ears. We scheduled an appointment wil our old audiology center, so we wouldn't have to drive 4 hours just to get an impression made. We ended up seeing our old audiologist, the one who refused to even discuss the CI. It didn't go over so well.
We went in and she asked if both earmolds needed replaced. I told her "No. She will be getting an implant on her right side October 10th". She paused and looked up. I told her we had been seeing the other audiologist and that we just needed the earmold and didn't want to drive all the way up there to get it. She got very cold, and obviously mad. She asked "Have you already been approved for the CI?". I told her "Yes. We have the surgery already scheduled." She then asked something to the affect of "Are you sure?" I again repeated that Miss Kat would be receiving an implant in the next few weeks. She was visibly upset by the whole situation. It seemed very personal. I knew that she didn't support the idea of Miss Kat getting an implant, but at this point it is no longer her choice, or business.
The whole experience worried me. I know that she is on the implant committee, and I was worried that she was going to do something to put Miss Kat's surgery in jeopardy. As soon as I got home I called our audiologist. I told him what had happened and her reaction to the news. I told him that I was worried that she would try to interfere, and I asked him if she had that power. He reassured me. He told me that she isn't involved and that she couldn't do anything at this point. I am so relieved. I had no idea it was so personal for her. Why would this bother her? I knew that she didn't like that we sign, but come on!
We went in and she asked if both earmolds needed replaced. I told her "No. She will be getting an implant on her right side October 10th". She paused and looked up. I told her we had been seeing the other audiologist and that we just needed the earmold and didn't want to drive all the way up there to get it. She got very cold, and obviously mad. She asked "Have you already been approved for the CI?". I told her "Yes. We have the surgery already scheduled." She then asked something to the affect of "Are you sure?" I again repeated that Miss Kat would be receiving an implant in the next few weeks. She was visibly upset by the whole situation. It seemed very personal. I knew that she didn't support the idea of Miss Kat getting an implant, but at this point it is no longer her choice, or business.
The whole experience worried me. I know that she is on the implant committee, and I was worried that she was going to do something to put Miss Kat's surgery in jeopardy. As soon as I got home I called our audiologist. I told him what had happened and her reaction to the news. I told him that I was worried that she would try to interfere, and I asked him if she had that power. He reassured me. He told me that she isn't involved and that she couldn't do anything at this point. I am so relieved. I had no idea it was so personal for her. Why would this bother her? I knew that she didn't like that we sign, but come on!
More dates
So, we have our pre-op appointment set up for October 9. That is when we find out what time we need to arrive at the hospital, and go over all the details about recovery. Then or post-op appointment is one month later, November 11. That is the day we will get the all clear to activate. We are upset that it is sooooooo long, but we don't really have a choice. Activation is then scheduled for November 17 and 18. Our audiologist likes to do it over two days so he can get the best MAPS he can. That means an overnight in a hotel or a four hour round trip two days in a row...hotel it is! He said he will be sending us home with six maps, three on each of the processors.
I am excited and nervous. It seems like the surgery is so soon, but the activation is so far away!
I am excited and nervous. It seems like the surgery is so soon, but the activation is so far away!
Ordered the device
We drove up and saw our audiologist for the first time since we were approved for surgery. We ordered the CI. We decided to go with the Advanced Bionics for a number of reasons. We like the t-mic feature, we love that it is right in the ear, just like normal hearing. We love the HiRes Fidelity 120, we are very excited for Miss Kat to get that. We also like that each of the electrodes has an individual power source, and it has a wider window of sound capture. We like the battery indicator light, and the fact that we just have to flip a switch to change MAPs. We also like that it has the fastest stimulation rate for the auditory nerve. Oh, and did I mention, it was the cutest!!
The only con we are worried about with the AB is the failure rate. It is significantly higher than Cochlear, but we feel like it was a fluke (with supplier b) and that it has been resolved. We are very happy with our choice.
We have ordered this processor:
Our audiologist AND speech therapist both mentioned a strange pattern they have noticed, after we chose our device. They mentioned (separately)that they have noticed certain personality traits with the parents that chose AB. The audiologist said that he has seen a strong correlation between AB and Mac users! The therapist said that when she worked in Seattle, all her computer programmer parents ALWAYS choose AB. I have also noticed that the moms I get along with all seem to choose AB....interesting......
The only con we are worried about with the AB is the failure rate. It is significantly higher than Cochlear, but we feel like it was a fluke (with supplier b) and that it has been resolved. We are very happy with our choice.
We have ordered this processor:
Our audiologist AND speech therapist both mentioned a strange pattern they have noticed, after we chose our device. They mentioned (separately)that they have noticed certain personality traits with the parents that chose AB. The audiologist said that he has seen a strong correlation between AB and Mac users! The therapist said that when she worked in Seattle, all her computer programmer parents ALWAYS choose AB. I have also noticed that the moms I get along with all seem to choose AB....interesting......
Tuesday, September 16, 2008
WE GOT OUR SURGERY DATE!!!
It is October 10th. It is only 24 days away. It feels too soon. Was this too easy? Have we really thought this out enough? Done enough research? The burden of being the parent of Miss Kat is weighing heavily today. Sitting in the waiting room for the ENT made me physically ill. I am so afraid for her.
Monday, September 15, 2008
Appointment with the surgeon tomorrow
We have the big, long awaited appointment with the surgeon tomorrow. I am hoping this will be the only time we meet with him before surgery, so we created a list of questions for him to answer. Hopefully, he will assure me and we will quickly move on to getting Miss Kat her CI.
Questions for surgeon
How long have you been doing implants?
How many have you done?
How comfortable are you with the AB implant?
What are your failure rates?
How many explants have you had to do?
Infection rates?
Meningitis?
Do you feel like the nucleus contour provides a more delicate insertion, therefore sparing more residual hearing?
What are your feelings about technical alterations in the operative technique of cochlear implantation designed to preserve hearing including: (1) avoidance of acoustic trauma using low speed drills; (2) careful placement of the cochleostomy anterior and inferior to the round window membrane to avoid damage to the basilar membrane and ossea spiral lamina; (3) the use of steroids to protect against injury to the organ of Corti at the cellular level; (4) the use of shorter, thinner, atraumatic electrodes; and (5) a small cochleostomy to prevent buckling of the electrode and escape of perilymph?
Are you comfortable with the support staff at LDS Hospital i.e. their ability to work on young children?
Who at the hospital can I contact with my questions (interpreter, recovery room, etc.)?
Do you have any concerns about AB in general (failure rates, future, technology)?
In my research, I’ve noticed that more and more centers are activating early, some as soon as 24 hours after surgery. I was hoping since she is a good hearing aid user and much older than average, that she would be a candidate for early activation. Cache is on board if you are!
What does the recovery look like? How long will the “turban” stay on? How long for the steri-strips? How long until we can wash her hair? Go back to school?
What are the most common side effects? Chances of facial paralysis? Taste issues? Balance problems? Tinnitus?
What kind of pain medication will she get?
So, that's my list. Tomorrow I will get the answers we need. Then Wednesday, Miss Kat is getting her last meningitis vaccination, and then Thursday we see the audiologist to order the device. Things are moving quickly now, and I'm excited....today is a good day.
Questions for surgeon
How long have you been doing implants?
How many have you done?
How comfortable are you with the AB implant?
What are your failure rates?
How many explants have you had to do?
Infection rates?
Meningitis?
Do you feel like the nucleus contour provides a more delicate insertion, therefore sparing more residual hearing?
What are your feelings about technical alterations in the operative technique of cochlear implantation designed to preserve hearing including: (1) avoidance of acoustic trauma using low speed drills; (2) careful placement of the cochleostomy anterior and inferior to the round window membrane to avoid damage to the basilar membrane and ossea spiral lamina; (3) the use of steroids to protect against injury to the organ of Corti at the cellular level; (4) the use of shorter, thinner, atraumatic electrodes; and (5) a small cochleostomy to prevent buckling of the electrode and escape of perilymph?
Are you comfortable with the support staff at LDS Hospital i.e. their ability to work on young children?
Who at the hospital can I contact with my questions (interpreter, recovery room, etc.)?
Do you have any concerns about AB in general (failure rates, future, technology)?
In my research, I’ve noticed that more and more centers are activating early, some as soon as 24 hours after surgery. I was hoping since she is a good hearing aid user and much older than average, that she would be a candidate for early activation. Cache is on board if you are!
What does the recovery look like? How long will the “turban” stay on? How long for the steri-strips? How long until we can wash her hair? Go back to school?
What are the most common side effects? Chances of facial paralysis? Taste issues? Balance problems? Tinnitus?
What kind of pain medication will she get?
So, that's my list. Tomorrow I will get the answers we need. Then Wednesday, Miss Kat is getting her last meningitis vaccination, and then Thursday we see the audiologist to order the device. Things are moving quickly now, and I'm excited....today is a good day.
Saturday, September 6, 2008
Therapy continues
Miss Kat had another great session with her therapist yesterday. She has been improving by leaps and bounds. The whole team is so excited by her progress. Our therapist said that if we had asked for a CI a year ago, she would have thought it was a bad idea. But now she thinks that Miss Kat is a great candidate. She said she believes that once Katrina gets the implant, her spoken language will explode.
I'm going to try to explain what Miss Kat was doing in speech, but it is a little complicated so I hope it makes sense. Katrina doesn't understand a whole lot of speech yet, she has a few dozen words that she can process. But, that is understandable with her hearing loss. Right now we are working on just hearing different rhythms. Miss Kat was able to tell the difference between "ouch!", "Sit down", and "Do you want to play?". Again, she didn't understand the meaning (except for ouch, because she uses that word already) but she was able to tell which was spoken 100% of the time! That means that she can hear the difference in syllables and can remember which picture corresponds to which phrase.
I don't know if any of this sounds like a big deal to anyone else, but for us, it is huge. Miss Kat is finally making progress. She had been stuck at the same level for 2+ years. She didn't understand and she couldn't do it. We have really had a break through, and it couldn't have come at a better time. I feel like this is just another sign that the implant is the right thing, and that now is the right time.
I'm going to try to explain what Miss Kat was doing in speech, but it is a little complicated so I hope it makes sense. Katrina doesn't understand a whole lot of speech yet, she has a few dozen words that she can process. But, that is understandable with her hearing loss. Right now we are working on just hearing different rhythms. Miss Kat was able to tell the difference between "ouch!", "Sit down", and "Do you want to play?". Again, she didn't understand the meaning (except for ouch, because she uses that word already) but she was able to tell which was spoken 100% of the time! That means that she can hear the difference in syllables and can remember which picture corresponds to which phrase.
I don't know if any of this sounds like a big deal to anyone else, but for us, it is huge. Miss Kat is finally making progress. She had been stuck at the same level for 2+ years. She didn't understand and she couldn't do it. We have really had a break through, and it couldn't have come at a better time. I feel like this is just another sign that the implant is the right thing, and that now is the right time.
Friday, September 5, 2008
MRI day
So here I am, 3:30 in the afternoon, sitting in a freezing hospital recovery room with a pencil in hand and one of those stupid itchy blankets draped over my lap. I'm waiting while my precious baby is having a MRI. She is so brave.
Miss Kat was so brave when I told her that they had to put in an IV. She cried but as soon as it was over, she was fine again. She didn't even complain about not being able to eat all day. she really is amazing. Her little body has been through so much in her life. But still, she is incredibly healthy and strong. Not to mention her special spirit! Miss Kat is brave, sweet, smart and so funny. I would say that I am proud of her, but that would imply that I had something to do with it!
Sometimes I think that we should just leave her alone, that I can't believe I am putting her through this, and now is one of those times. But on the other hand, rewind 90 minutes ago, I took Miss Kat up to the audiology department and showed her the Advanced Bionics earpieces and implants. I was sure then. I knew this was right. But now, as they took her limp body from my arms, now it's so scary. I'm here, alone and cold, and so frightened for her. I can't hear her babbling, reminding me that she wants to speak. I can't see her shaking a toy next to her ear signing"listen!" to remind me that she wants to hear, that she misses sounds, and wants them back. I need to remember and I need to be strong...for her.
Now she's back with me again. all wrapped up and asleep. The radiology tech just told me everything looks perfect, she is clear for the implant. I also just realised that the next time I see her sedated, in a hospital bed, she will have the implant inside her. I'm so scared, and now, nauseous. This is a big deal, can I do this to (for) her? I'm terrified, but sure. This is right. I will be strong- for my girl.
Miss Kat was so brave when I told her that they had to put in an IV. She cried but as soon as it was over, she was fine again. She didn't even complain about not being able to eat all day. she really is amazing. Her little body has been through so much in her life. But still, she is incredibly healthy and strong. Not to mention her special spirit! Miss Kat is brave, sweet, smart and so funny. I would say that I am proud of her, but that would imply that I had something to do with it!
Sometimes I think that we should just leave her alone, that I can't believe I am putting her through this, and now is one of those times. But on the other hand, rewind 90 minutes ago, I took Miss Kat up to the audiology department and showed her the Advanced Bionics earpieces and implants. I was sure then. I knew this was right. But now, as they took her limp body from my arms, now it's so scary. I'm here, alone and cold, and so frightened for her. I can't hear her babbling, reminding me that she wants to speak. I can't see her shaking a toy next to her ear signing"listen!" to remind me that she wants to hear, that she misses sounds, and wants them back. I need to remember and I need to be strong...for her.
Now she's back with me again. all wrapped up and asleep. The radiology tech just told me everything looks perfect, she is clear for the implant. I also just realised that the next time I see her sedated, in a hospital bed, she will have the implant inside her. I'm so scared, and now, nauseous. This is a big deal, can I do this to (for) her? I'm terrified, but sure. This is right. I will be strong- for my girl.
So, I started thinking
I realized that once our MRI is done, we will be waiting for 6 weeks to see the surgeon. I spoke to our audiologist and he thought that was too long. He suggested I call back and ask if they have any openings with the other surgeon. (Turns out our ENT is very territorial and has just recently begun "letting" the other ENTs work on kids) So, I called the office again. I explained that we were scheduled to get our MRI in two days, so could we get an earlier appointment if we used surgeon #2. The secretary looked and was able to get us in with surgeon #1 in two weeks!!!! I was dumbfounded. September 16, a full month earlier! I also called the audiologist back and made an appointment to order the device, September 18. Suddenly the ball is rolling very fast.
We could be looking at a surgery date in October instead of December now! I got so nervous I started calling all the parents of CI kids I know. I had to go out for a walk, just to get rid of my nervous energy. I am thrilled that this is really going to happen now, but it is also scary that it is happening so soon. I am still in shock, I think. I had never believed Miss Kat would be an implant candidate, and then when her loss got more severe, I thought that people would say no. I really think, at the beginning of this journey, I had never considered that it would actually happen. That she would ever really get a CI. Guess I was wrong!
We could be looking at a surgery date in October instead of December now! I got so nervous I started calling all the parents of CI kids I know. I had to go out for a walk, just to get rid of my nervous energy. I am thrilled that this is really going to happen now, but it is also scary that it is happening so soon. I am still in shock, I think. I had never believed Miss Kat would be an implant candidate, and then when her loss got more severe, I thought that people would say no. I really think, at the beginning of this journey, I had never considered that it would actually happen. That she would ever really get a CI. Guess I was wrong!
Saturday, August 30, 2008
Speech therapy
Miss Kat had her first speech therapy appointment yesterday. She ROCKED IT OUT!!!! She did better than anyone could have ever expected.
Miss Kat understood words that I had no idea she knew! The therapist gave her a few little tests, and she was nearly perfect! She wasn't just parroting, she understood and would pick up the toy that corresponded to the word.She was able to discriminate between four, one syllable, "B" words. The therapist was so impressed that she looked up at the mirror and said "Wow, Mom, you guys must have been working!"
Katrina seems to have finally "got it". She understands that we want her to learn to listen. She understands that the sounds she hears are related to the sounds she makes, and that they have meaning. She now know that "BAY-BEE" means the ASL sign for baby (which she already understands means a infant). She gets it it, and she knows we communicate with our voices, and she wants to be able to, as well.
This was the missing piece we never had before. Miss Kat has been able to hear fairly well, she has great intonation and is able to parrot any sound she hears. She just has always seen it as a game. She has never connected the sounds she heard with the ones she makes. She also never cared! She didn't like when we would voice and she would insist that we be quiet. It has all changed. She wants to understand. I am so happy that she is older now. I know I couldn't have made this commitment when she was younger, especially if she wasn't interested in cooperating.
As we were finishing up, the therapist and I discussed the CI. She said that she believed that Miss Kat should get it as soon as possible. She said "There is no reason to leave her frustrated". She also said that she would call our audiologist and the surgeon and tell them to"fast track her"!!!!!
I am so proud of Miss Kat. She worked hard, stayed focused, and she did so well. I am starting to actually believe the the implant is the absolute right decision. This will work for her, and she will be able to learn to listen, and she will be able to learn to use spoken language. I have never been prouder!
Miss Kat understood words that I had no idea she knew! The therapist gave her a few little tests, and she was nearly perfect! She wasn't just parroting, she understood and would pick up the toy that corresponded to the word.She was able to discriminate between four, one syllable, "B" words. The therapist was so impressed that she looked up at the mirror and said "Wow, Mom, you guys must have been working!"
Katrina seems to have finally "got it". She understands that we want her to learn to listen. She understands that the sounds she hears are related to the sounds she makes, and that they have meaning. She now know that "BAY-BEE" means the ASL sign for baby (which she already understands means a infant). She gets it it, and she knows we communicate with our voices, and she wants to be able to, as well.
This was the missing piece we never had before. Miss Kat has been able to hear fairly well, she has great intonation and is able to parrot any sound she hears. She just has always seen it as a game. She has never connected the sounds she heard with the ones she makes. She also never cared! She didn't like when we would voice and she would insist that we be quiet. It has all changed. She wants to understand. I am so happy that she is older now. I know I couldn't have made this commitment when she was younger, especially if she wasn't interested in cooperating.
As we were finishing up, the therapist and I discussed the CI. She said that she believed that Miss Kat should get it as soon as possible. She said "There is no reason to leave her frustrated". She also said that she would call our audiologist and the surgeon and tell them to"fast track her"!!!!!
I am so proud of Miss Kat. She worked hard, stayed focused, and she did so well. I am starting to actually believe the the implant is the absolute right decision. This will work for her, and she will be able to learn to listen, and she will be able to learn to use spoken language. I have never been prouder!
We spoke to the surgeon's office!
Finally spoke to someone at the surgeons office. We have our appointment... Oct. 16. We need to get an MRI before then, and then we will be headed for surgery! I asked the secretary how long it takes after the appointment to actually get the surgery. She said that, of course, it varies but that it is normally 4 to 6 weeks after insurance approval. I told her we have medicaid and asked her how long that usually takes or if it will be a problem. She told me medicaid should approve quickly (so long as she is an implant candidate). I told her that she should be. She then said that they are starting to schedule at Primary Children's Hospital for Dec. 5. I was dumbfounded. We actually had a far off goal. I had mentioned earlier that Miss Kat is five years old now, so she thought to herself for a moment and remarked that Katrina could even be seen at LDS hospital since she was so old. She said that they have more OR time at LDS so it could be much earlier!
I can't believe we are doing this. Could this actually be happening? I've been thinking about how poor her hearing now is with her aids. We start speech therapy this week and I worry about how much good it will even do. She was making such great progress last year, I am concerned that it won't happen again. What if her hearing was so poor now that her speech and listening skills couldn't improved? It seemed possible. Her speech was very quickly deteriorating. Her "daddy" was now "baa". Even "No" was intelligible. She needs the implant to bring her back to where she was, let alone make it possible for her to improve. I am more sure than ever that this is the right choice for her.
I called and set up Miss Kat's appointment for her MRI. She hoes in Sept. 4 at 2:45. It is way before her ENT appointment, so I'm going to start calling every morning to see if they had a cancellation, so maybe we can move the whole thing up. I'm starting to feel the urgency. She needs this now. I don't want her to have to wait one extra day. The idea of 4 weeks between surgery and activation is killing me....
I can't believe we are doing this. Could this actually be happening? I've been thinking about how poor her hearing now is with her aids. We start speech therapy this week and I worry about how much good it will even do. She was making such great progress last year, I am concerned that it won't happen again. What if her hearing was so poor now that her speech and listening skills couldn't improved? It seemed possible. Her speech was very quickly deteriorating. Her "daddy" was now "baa". Even "No" was intelligible. She needs the implant to bring her back to where she was, let alone make it possible for her to improve. I am more sure than ever that this is the right choice for her.
I called and set up Miss Kat's appointment for her MRI. She hoes in Sept. 4 at 2:45. It is way before her ENT appointment, so I'm going to start calling every morning to see if they had a cancellation, so maybe we can move the whole thing up. I'm starting to feel the urgency. She needs this now. I don't want her to have to wait one extra day. The idea of 4 weeks between surgery and activation is killing me....
Tuesday, August 26, 2008
THE appointment
We had our meeting. It was long and intense. When we arrived, I think the audiologist had no intention of us getting an implant. I think that he might have even spoken to the individual we used to see!
Our conversation began with how well she could hear now. He said that he thought she should be getting better results with her aids. He thought that she should be speaking and understanding better. She was on the edge of being a candidate, but he said he didn't want to put her through a surgery to have her not use the device. He was concerned that she was "just one of those kids who can't learn to listen". I was devastated, but I completely disagreed. I think that she IS talking. That all the sounds she makes with her signs ARE words to her. I think that she is hearing so poorly that this is the best she can interpret.
He was also very displeased with her educational placement. I expected that. I knew that he would want her in an all oral environment. He said that he thought the best place for her to learn would be the Oral Deaf school. He thought that we should just throw her in and she would learn quickly. I told him NO! I was not interested in taking away her first language. Then he suggested a mainstream hearing classroom with an interpreter. I told him that I thought that was inappropriate as well. I told him that now that JMS was merging with the TC program, there was going to be more value placed on Oracy. I told him that her Kindergarten teacher was a hearing woman that we had in our home during PIP. She was also the TC Kindergarten teacher last year. The audiologist was very pleased with this information. I also told him that we had plans to attend private AVT listening/speech therapy twice a week. He remarked that he thought I was actually committed. I told him that I was glad that Miss Kat was older when she lost her hearing. I told him that I don't think I could have committed to the therapy and rehab if she was just a baby. I believe that she is old enough to see a difference and actually WANT to learn to speak. He was starting to see our perspective.
The thing that finally convinced him was giving Miss Kat a listening test. It was a closed set test, meaning that she had a card with 12 pictures and she was to point to the correct picture when he spoke the word. She scored a 15 out of 24, when just two weeks before she had gotten a 2! I had demonstrated to him that she COULD learn to listen. It took a lot of work and emphasis using the hearing aids, but Miss Kat had worked hard, and her reward would be the device that could make her job so much easier!
Our conversation began with how well she could hear now. He said that he thought she should be getting better results with her aids. He thought that she should be speaking and understanding better. She was on the edge of being a candidate, but he said he didn't want to put her through a surgery to have her not use the device. He was concerned that she was "just one of those kids who can't learn to listen". I was devastated, but I completely disagreed. I think that she IS talking. That all the sounds she makes with her signs ARE words to her. I think that she is hearing so poorly that this is the best she can interpret.
He was also very displeased with her educational placement. I expected that. I knew that he would want her in an all oral environment. He said that he thought the best place for her to learn would be the Oral Deaf school. He thought that we should just throw her in and she would learn quickly. I told him NO! I was not interested in taking away her first language. Then he suggested a mainstream hearing classroom with an interpreter. I told him that I thought that was inappropriate as well. I told him that now that JMS was merging with the TC program, there was going to be more value placed on Oracy. I told him that her Kindergarten teacher was a hearing woman that we had in our home during PIP. She was also the TC Kindergarten teacher last year. The audiologist was very pleased with this information. I also told him that we had plans to attend private AVT listening/speech therapy twice a week. He remarked that he thought I was actually committed. I told him that I was glad that Miss Kat was older when she lost her hearing. I told him that I don't think I could have committed to the therapy and rehab if she was just a baby. I believe that she is old enough to see a difference and actually WANT to learn to speak. He was starting to see our perspective.
The thing that finally convinced him was giving Miss Kat a listening test. It was a closed set test, meaning that she had a card with 12 pictures and she was to point to the correct picture when he spoke the word. She scored a 15 out of 24, when just two weeks before she had gotten a 2! I had demonstrated to him that she COULD learn to listen. It took a lot of work and emphasis using the hearing aids, but Miss Kat had worked hard, and her reward would be the device that could make her job so much easier!
Friday, August 22, 2008
The changes begin
I was broken hearted that a professional would treat us with such disrespect. She didn't seem to care about Miss Kat's well being at all. She had decided that since we had not followed her directions and used ASL, despite her strongly worded orders, that this was her way of paying her back.
I spoke with a friend who has 2 CI children. She was appalled by my audiologist's behavior. She gave me the name and number of the person her children see. She told me he was a wonderful audiologist, and that he loves implants. He is rather aggressive, and perhaps a second opinion was in order. We had nothing to lose.
Our first visit was scheduled. I was terrified. I didn't know if I even wanted to get a CI for Miss Kat. Was I going through all this trouble for something that was a mistake? What if he said no? Or worse still, what if he said YES??? Was this truly what we wanted. We thought long and hard as the appointment approached. Yes, this was right. Kat deserved proper amplification. She had been able to hear in the past, and there were many indications that she enjoyed what she could hear. We didn't want to take away the language and culture that she has, we want to give her more. More opportunities for language, better access and the ability to communicate with everyone. We were ready to do this.
I spoke with a friend who has 2 CI children. She was appalled by my audiologist's behavior. She gave me the name and number of the person her children see. She told me he was a wonderful audiologist, and that he loves implants. He is rather aggressive, and perhaps a second opinion was in order. We had nothing to lose.
Our first visit was scheduled. I was terrified. I didn't know if I even wanted to get a CI for Miss Kat. Was I going through all this trouble for something that was a mistake? What if he said no? Or worse still, what if he said YES??? Was this truly what we wanted. We thought long and hard as the appointment approached. Yes, this was right. Kat deserved proper amplification. She had been able to hear in the past, and there were many indications that she enjoyed what she could hear. We didn't want to take away the language and culture that she has, we want to give her more. More opportunities for language, better access and the ability to communicate with everyone. We were ready to do this.
Thursday, August 14, 2008
Our hurdles
So, now our decision is made. We believe that Miss Kat would benefit from a cochlear implant. It is time to get the ball rolling. I made an appointment with the audiologist we have been seeing for the last 3 1/2 years.
It took a lot of courage for me to admit I had been wrong about CI parents, and implants in general. It was a very big deal for me to even consider it for my child, and even bigger for me to ask for information from a professional. I went to my audiologist hoping that I would find support and unbiased information. That is not what happened at all.
The audiologist said absoultly not. She told me that she would never recommend that Miss Kat get a CI, that the road ended here. She said she would never allow a child to be implanted unless she knew that the child would become 100% oral, and that since we decided to use ASL with Katrina, she wouldn't allow us to get an implant.
It took a lot of courage for me to admit I had been wrong about CI parents, and implants in general. It was a very big deal for me to even consider it for my child, and even bigger for me to ask for information from a professional. I went to my audiologist hoping that I would find support and unbiased information. That is not what happened at all.
The audiologist said absoultly not. She told me that she would never recommend that Miss Kat get a CI, that the road ended here. She said she would never allow a child to be implanted unless she knew that the child would become 100% oral, and that since we decided to use ASL with Katrina, she wouldn't allow us to get an implant.
Further Complications
In the winter of 2007, Miss Kat lost even more hearing. I remember taking her back to school after an audiology appointment and telling everyone that she was officially Deaf now. Up until that point she had been "hard of hearing", but at that appointment she crossed the line to "severe". She was around 80 db in most frequencies. At the lowest (450 hz) Miss Kat still was "moderate" but in the speech frequencies, she was Deaf.
It was at this point that I started considering a cochlear implant. Miss Kat had never been a candidate before so I sort of judged other parents who implanted their kids. I believed that they wanted to fix their kids. They didn't accept their children as Deaf, they wanted to make them hearing. They were lazy and selfish. I only knew one family who used CI's and signed with their children. The rest were oral only and they shunned the Deaf community. I didn't want to be like those other families. I believed that ASL was the best, natural, first language for my daughter. I believe that I am raising a Deaf adult, so I take the long view and think about what will be the best thing for her whole self, emotionally, developmentally, and spiritually, not just focusing on her "broken ears". I was on a soapbox, judging people who I didn't know, because I could. It was a decision I didn't have to make so I could say that they were wrong and live in my happy little bubble....until I couldn't.
It took a few days and a lot of thought, but I finally mentioned the idea of a CI to my husband. I asked if he thought we should look into it. He immediately said yes, and that he thought it would be a very good thing for Miss Kat. I was so confused. Had he been pro-implant this whole time? He just said "It is a technology. It is neither good or bad. Our philosophy and home won't change, just what she uses to hear with. It is just a much more powerful hearing device, and it happens to have to be inside her." I was shocked again by how insightful and grounded J.D. always is. A CI wouldn't define us. It doesn't define anyone. It is merely another technology. A source of amplification, a tool for my child. I felt stronger, supported by my husband, we were going to start the journey to get a cochlear implant for our daughter.
It was at this point that I started considering a cochlear implant. Miss Kat had never been a candidate before so I sort of judged other parents who implanted their kids. I believed that they wanted to fix their kids. They didn't accept their children as Deaf, they wanted to make them hearing. They were lazy and selfish. I only knew one family who used CI's and signed with their children. The rest were oral only and they shunned the Deaf community. I didn't want to be like those other families. I believed that ASL was the best, natural, first language for my daughter. I believe that I am raising a Deaf adult, so I take the long view and think about what will be the best thing for her whole self, emotionally, developmentally, and spiritually, not just focusing on her "broken ears". I was on a soapbox, judging people who I didn't know, because I could. It was a decision I didn't have to make so I could say that they were wrong and live in my happy little bubble....until I couldn't.
It took a few days and a lot of thought, but I finally mentioned the idea of a CI to my husband. I asked if he thought we should look into it. He immediately said yes, and that he thought it would be a very good thing for Miss Kat. I was so confused. Had he been pro-implant this whole time? He just said "It is a technology. It is neither good or bad. Our philosophy and home won't change, just what she uses to hear with. It is just a much more powerful hearing device, and it happens to have to be inside her." I was shocked again by how insightful and grounded J.D. always is. A CI wouldn't define us. It doesn't define anyone. It is merely another technology. A source of amplification, a tool for my child. I felt stronger, supported by my husband, we were going to start the journey to get a cochlear implant for our daughter.
Sunday, August 10, 2008
School begins
When Miss Kat was approaching her third birthday, it was time to pick a school. We had always taken a sort of Total Communication route in our home. We would sign in English word order, CASE, and speak the English words at the same time. Kat on the other had was much more comfortable with a more ASL structure. We needed to see the school options and decide which would be the "least restrictive environment" for Miss Kat to learn.
In our area we had 3 options at the school for the Deaf, and our local school district preschool. We started by visiting the local preschool. We knew right away this was no appropriate for Miss Kat. She would be the only child with a hearing loss that they had ever had, the class had 22 students and no one understood sign. That choice was out.
We next visited the self-contained Oral preschool class for the Deaf. It was in a normal hearing elementary school. They had three rooms full of new and cool toys. There were around 15 kids in the program with 3 teachers. We observed the class. The kids seem very behind. Most of them didn't respond when the teacher's spoke to them. They couldn't follow one step instructions like "Go sit down", several didn't seem to know their names! They had to use gestures to show the kids what they wanted. We asked if the teachers would understand when Miss Kat signed to them. They told me that they knew some signs and would probably understand, but they would NEVER sign back and that "Eventually, she'll stop too". We also made the mistake of signing when we were in the classroom. All the children whipped around and stared at our hands. The teachers got really grumpy with us too. We knew that this would be a terrible fit for Miss Kat.
Next, we visited the TC classroom. It was located just down the hall from Oral preschool. There were only 5 kids in this class. We sat down to observe, assuming this would be the placement for our Kat. The very first thing we were struck by was how behind the kids where. Miss Kat knew all her colors and letters and a few numbers before she turned 3, but these children were still working on single nouns! "Shoes" (signs shoes as well) "Shoes" (signs shoes again) "These are SHOES" (signs only the word shoes). There are 3-4 year olds who don't even know the word shoe? I was horrified. We also noticed that the teacher only signed every third or so word. When the teacher voiced "Let's all get our coats, line up, and then we'll go outside", she only signed "Coat", "line", and "outside". That was a terrible signing language model! Even I signed better than that! After we spoke with the teachers we also learned that they considered TC a class for kids who either weren't ready for the Oral class, or who had been in that class and failed. They had a variety of ages in the class and almost all had no language. We didn't want a class for failures for Miss Kat, and we didn't want her to stop signing. This was not the place for her.
The last option for Miss Kat was a school called Jean Massieu School. It was started as a charter school by some parents who didn't think the State School for the Deaf had good enough options. It is a Bilingual-Bi cultural or bi-bi school. That means the school is a voice-off program. All instruction and class room communication is in ASL. Almost all the students were Deaf children of Deaf parents. We had been told that since Miss Kat wore hearing aids and we were hearing, that we wouldn't want this school. We decided we should visit anyway. JMS was located in a run down old elementary school. It was their 4th location in 5 years. The toys were old and worn out, obviously most were purchased second hand or donated. There were four 3 year olds and three 4 year olds sharing a classroom. The kids ran over and started asking us questions as soon as we walked in the door. The oldest boy signed so fast and animated that I had no idea what he was saying! The youngest, Jamila, walked straight up to Miss Kat and signed "Two-of-us (are) friends now. Come play. (We) have a slide." I was hooked. These kids could communicate. They had language. They were normal kids at a normal school that happen to use a different language than I do. The children were being taught an age appropriate curriculum. They weren't behind. The teachers expected the kids to understand them, to tell stories, to communicate. They read stories, and had circle time. They weren't special needs, or handicapped, they were just Deaf.
Miss Kat now attends the Jean Massieu School for the Deaf and will be entering Kindergarten in a few weeks.
In our area we had 3 options at the school for the Deaf, and our local school district preschool. We started by visiting the local preschool. We knew right away this was no appropriate for Miss Kat. She would be the only child with a hearing loss that they had ever had, the class had 22 students and no one understood sign. That choice was out.
We next visited the self-contained Oral preschool class for the Deaf. It was in a normal hearing elementary school. They had three rooms full of new and cool toys. There were around 15 kids in the program with 3 teachers. We observed the class. The kids seem very behind. Most of them didn't respond when the teacher's spoke to them. They couldn't follow one step instructions like "Go sit down", several didn't seem to know their names! They had to use gestures to show the kids what they wanted. We asked if the teachers would understand when Miss Kat signed to them. They told me that they knew some signs and would probably understand, but they would NEVER sign back and that "Eventually, she'll stop too". We also made the mistake of signing when we were in the classroom. All the children whipped around and stared at our hands. The teachers got really grumpy with us too. We knew that this would be a terrible fit for Miss Kat.
Next, we visited the TC classroom. It was located just down the hall from Oral preschool. There were only 5 kids in this class. We sat down to observe, assuming this would be the placement for our Kat. The very first thing we were struck by was how behind the kids where. Miss Kat knew all her colors and letters and a few numbers before she turned 3, but these children were still working on single nouns! "Shoes" (signs shoes as well) "Shoes" (signs shoes again) "These are SHOES" (signs only the word shoes). There are 3-4 year olds who don't even know the word shoe? I was horrified. We also noticed that the teacher only signed every third or so word. When the teacher voiced "Let's all get our coats, line up, and then we'll go outside", she only signed "Coat", "line", and "outside". That was a terrible signing language model! Even I signed better than that! After we spoke with the teachers we also learned that they considered TC a class for kids who either weren't ready for the Oral class, or who had been in that class and failed. They had a variety of ages in the class and almost all had no language. We didn't want a class for failures for Miss Kat, and we didn't want her to stop signing. This was not the place for her.
The last option for Miss Kat was a school called Jean Massieu School. It was started as a charter school by some parents who didn't think the State School for the Deaf had good enough options. It is a Bilingual-Bi cultural or bi-bi school. That means the school is a voice-off program. All instruction and class room communication is in ASL. Almost all the students were Deaf children of Deaf parents. We had been told that since Miss Kat wore hearing aids and we were hearing, that we wouldn't want this school. We decided we should visit anyway. JMS was located in a run down old elementary school. It was their 4th location in 5 years. The toys were old and worn out, obviously most were purchased second hand or donated. There were four 3 year olds and three 4 year olds sharing a classroom. The kids ran over and started asking us questions as soon as we walked in the door. The oldest boy signed so fast and animated that I had no idea what he was saying! The youngest, Jamila, walked straight up to Miss Kat and signed "Two-of-us (are) friends now. Come play. (We) have a slide." I was hooked. These kids could communicate. They had language. They were normal kids at a normal school that happen to use a different language than I do. The children were being taught an age appropriate curriculum. They weren't behind. The teachers expected the kids to understand them, to tell stories, to communicate. They read stories, and had circle time. They weren't special needs, or handicapped, they were just Deaf.
Miss Kat now attends the Jean Massieu School for the Deaf and will be entering Kindergarten in a few weeks.
The next step...
We were sent to Primary Children's to see a pediatric audiologist. Miss Kat was fitted with Oticon Gaia (hot pink) hearing aids. We did more booth testing. With her hearing aids, Kat was hearing in the "normal" range. Her loss was sloping. The higher the frequency, the worse she heard. At 450 Hz, she could hear at 15 db WITHOUT her aids. But she quickly dropped to around 60db. The highest frequencies, 2000 and 4000 Hz, are where some of the most important speech information is. "Ssss" and "Shh" and "K" and "Th" are all high frequency. Miss Kat couldn't hear any of those without her aids. But with this technology, she could. She was aided to about 15 db.
This was going to work. Katrina would be able to hear us again. The audiologist told us that we should stop signing so we could focus on speech. She told me that if Miss Kat didn't learn to talk it was because I was a lazy mother. We disagreed. We knew that signing was working for Kat. She was able to tell us what she needed and understand some of what we said, so we kept signing.
Early Intervention sent a professional from the Parent Infant Program at the School for the Deaf to our home. Our first PIP adviser's name was Aimee. Aimee would come to our home and explain about hearing loss. She would teach us how to draw attention to noises so that Kat would start to learn that sounds have meaning, learn to listen. She would also come and teach us more signs.
Miss Kat had a difficult year. She was frustrated a lot, but she learned very quickly. She had 150+ signs by the time she was 2. We did a lot of explaining through pictures. We had trouble getting Kat to go to the car, so we made a chart. We took pictures of all the places we go, and then would stick them up on the chart so she would know the plan for the day. Then, if she would start to dawdle, we would show her the picture and she would get excited and get ready to go.
Christmas rolled around and we had to explain Santa. We spent hours looking for a book that showed Santa leaving presents under the tree. There were lots that showed Santa with presents, but we needed her to see that Santa had the gifts, and then he left them (and if possible, that he ate the cookies and milk that the kids left out for him!). We finally found the right book and spent weeks explaining what would happen and why. But she understood, and the look in her eyes when she woke up and her stocking was full was worth the effort.
When we found out that Miss Kat had a hearing loss, we began to attend a Deaf church and took ASL classes at our local Deaf community center. We breezed through the beginning ASL class with the help of our "Signing Time" videos. We switched over to the Deaf ward because, as she learned more signs, her nursery leaders started being nasty to her. "What does she keep doing with her hands?", they asked us one afternoon. And, "I just don't understand what she wants!" We no longer felt like she was in the right place. We went and visited the Deaf ward, knowing that we would be lost. The Deaf community was so welcoming and patient with our lousy ASL. They thanked us for learning, and embraced us and began teaching us. We knew that she was in the right place.
Kat received PIP services in our home, and speech. Her signing was getting better and better, but her speech and understanding was still poor. Over the course of the next 18 months she lost more hearing. She was moderately-severe now. And her language was growing to be only ASL. We still spoke with everything we signed, but she just wasn't understanding or responding with spoken language. We started to really focus on ASL. It was our way to communicate with our daughter. She understood language, and was learning quickly. It didn't matter that it wasn't our language. We are the parents, it is our job to meet her. She didn't have 100% access to speech, but her eyes worked great. We provided her with a language that she could access and she excelled.
This was going to work. Katrina would be able to hear us again. The audiologist told us that we should stop signing so we could focus on speech. She told me that if Miss Kat didn't learn to talk it was because I was a lazy mother. We disagreed. We knew that signing was working for Kat. She was able to tell us what she needed and understand some of what we said, so we kept signing.
Early Intervention sent a professional from the Parent Infant Program at the School for the Deaf to our home. Our first PIP adviser's name was Aimee. Aimee would come to our home and explain about hearing loss. She would teach us how to draw attention to noises so that Kat would start to learn that sounds have meaning, learn to listen. She would also come and teach us more signs.
Miss Kat had a difficult year. She was frustrated a lot, but she learned very quickly. She had 150+ signs by the time she was 2. We did a lot of explaining through pictures. We had trouble getting Kat to go to the car, so we made a chart. We took pictures of all the places we go, and then would stick them up on the chart so she would know the plan for the day. Then, if she would start to dawdle, we would show her the picture and she would get excited and get ready to go.
Christmas rolled around and we had to explain Santa. We spent hours looking for a book that showed Santa leaving presents under the tree. There were lots that showed Santa with presents, but we needed her to see that Santa had the gifts, and then he left them (and if possible, that he ate the cookies and milk that the kids left out for him!). We finally found the right book and spent weeks explaining what would happen and why. But she understood, and the look in her eyes when she woke up and her stocking was full was worth the effort.
When we found out that Miss Kat had a hearing loss, we began to attend a Deaf church and took ASL classes at our local Deaf community center. We breezed through the beginning ASL class with the help of our "Signing Time" videos. We switched over to the Deaf ward because, as she learned more signs, her nursery leaders started being nasty to her. "What does she keep doing with her hands?", they asked us one afternoon. And, "I just don't understand what she wants!" We no longer felt like she was in the right place. We went and visited the Deaf ward, knowing that we would be lost. The Deaf community was so welcoming and patient with our lousy ASL. They thanked us for learning, and embraced us and began teaching us. We knew that she was in the right place.
Kat received PIP services in our home, and speech. Her signing was getting better and better, but her speech and understanding was still poor. Over the course of the next 18 months she lost more hearing. She was moderately-severe now. And her language was growing to be only ASL. We still spoke with everything we signed, but she just wasn't understanding or responding with spoken language. We started to really focus on ASL. It was our way to communicate with our daughter. She understood language, and was learning quickly. It didn't matter that it wasn't our language. We are the parents, it is our job to meet her. She didn't have 100% access to speech, but her eyes worked great. We provided her with a language that she could access and she excelled.
Our story continues...
I called Early Intervention to seek speech therapy for Miss Kat, and they asked me a very odd question. They asked "Have you had her hearing checked?" I said, "Yes, twice." She had passed her newborn screening in the NICU, and she had had a sleeping ABR at 6 months. The ABR had shown a slight loss in one of the ears but the doctor said that she was probably just coming down with a cold. The EI people wanted to make sure that she was hearing ok so they had me make an appointment for a hearing test at the Department of Health.
That night when I told J.D. what they said something clicked for him. He told me he was sure that she couldn't hear right. We sat on the couch and discussed it. Miss Kat toddled by and headed for the kitchen. When her back was turned to us, he called her name quietly. She didn't react, then he clapped his hands loudly. She whipped around. He grinned at her, and then turned to me and said, "See!"
I remember sitting in the waiting room at the Department of Health. I was confused and scared. We got called back to the testing area and Miss Kat sat on my lap. They had a little TV on the desk in front of me with the sound turned all the way down. Sesame Street was on. The lady put a soft little probe into Kat's ear and waited. She looked confused. She took the probe out and listened to it, and mutterd "Weird". She told me that the machine must not be working, so we would move on to the booth test.
In the booth, Miss Kat would listen for a sound and then when she reacted a little dog would dance for her. She loved it! Kat paid attention very well. I was pleased that it went well, but knew she didn't hear everything I did. The lady walked out and said "Well, that explains why she didn't pass the first test, she can't hear!"
She sat me down, back in front of Sesame Street. She explained that Miss Kat did, in fact, have a hearing loss. She told me it was only a moderate loss and Katrina was going to be fine. She said she would learn to talk and go to school like regular kids. She made an appointment for us with an audiologist at the children's hospital. She told me Miss Kat was going to need hearing aids, but it would all be fine.
I went home that night and cried. Why was more happening to my baby? Hadn't she had enough problems for one lifetime? What did her future hold? J.D. was again level-headed and very matter of fact about the whole thing. He said "She wasn't talking for one of two reasons. Either she was deaf, or stupid, which would you rather have?" This comforted me. Miss Kat was fine. She would be ok. She would get her hearing aids and be right back on tract. Everything was going to be fine.
That night when I told J.D. what they said something clicked for him. He told me he was sure that she couldn't hear right. We sat on the couch and discussed it. Miss Kat toddled by and headed for the kitchen. When her back was turned to us, he called her name quietly. She didn't react, then he clapped his hands loudly. She whipped around. He grinned at her, and then turned to me and said, "See!"
I remember sitting in the waiting room at the Department of Health. I was confused and scared. We got called back to the testing area and Miss Kat sat on my lap. They had a little TV on the desk in front of me with the sound turned all the way down. Sesame Street was on. The lady put a soft little probe into Kat's ear and waited. She looked confused. She took the probe out and listened to it, and mutterd "Weird". She told me that the machine must not be working, so we would move on to the booth test.
In the booth, Miss Kat would listen for a sound and then when she reacted a little dog would dance for her. She loved it! Kat paid attention very well. I was pleased that it went well, but knew she didn't hear everything I did. The lady walked out and said "Well, that explains why she didn't pass the first test, she can't hear!"
She sat me down, back in front of Sesame Street. She explained that Miss Kat did, in fact, have a hearing loss. She told me it was only a moderate loss and Katrina was going to be fine. She said she would learn to talk and go to school like regular kids. She made an appointment for us with an audiologist at the children's hospital. She told me Miss Kat was going to need hearing aids, but it would all be fine.
I went home that night and cried. Why was more happening to my baby? Hadn't she had enough problems for one lifetime? What did her future hold? J.D. was again level-headed and very matter of fact about the whole thing. He said "She wasn't talking for one of two reasons. Either she was deaf, or stupid, which would you rather have?" This comforted me. Miss Kat was fine. She would be ok. She would get her hearing aids and be right back on tract. Everything was going to be fine.
Today, our first day
Well, I decided to start a blog. We are taking the first steps towards a cochlear implant, and I believe I need to record this journey. It will be full of highs and lows, important steps and set backs, and I want to remember it all.
An introduction, to begin?
My name is Melissa. I am 28 years old and married to a wonderful man named J.D.. We have one daughter, Katrina. She is 5 years old and headed to kindergarten. She is Deaf.
Miss Kat was born 6-3-03. We had a long and dangerous labor which ended with two failed forceps attempts and then an emergency c-section. I was unconscious for the delivery, but things did not go well. Kat was born very sick. She had passed a bowel movement in-utero and then inhaled the meconium into her lungs. Meconium is sticky and black, just like tar, and it was in her lungs. Miss Kat couldn't breath. We were told that she needed to be put on a very special machine called ECMO. ECMO stands for Extracorporeal Membrane Oxygenation. It is a heart and lung bypass machine. We were told that if she didn't get on ECMO, she would die. We later found out that they don't use this machine unless the baby has a greater than 90% chance of death without it, and still, 50% of the babies die.
Well, Miss Kat got better. She survived. She was taken off ECMO and she seemed to be just fine. There are a lot of side-effects from ECMO. Kids can have strokes, brain damage, blindness, paralysis, deafness, circulation issues, permanent lung damage such as asthma and more. But Kat was ok. When we left the hospital 6 weeks later, she was on oxygen, but very little, and was weak, but all around pretty healthy. She was doing great.
Miss Kat's first year was very normal. She had some small kidney issues, and was on the oxygen for 6 months, but otherwise was extremely healthy. She was a very strong willed baby, bossy about the things she liked and very vocal about the things she didn't! She developed just like any other baby, and at 9 months started babbling "Mamamama". I was ecstatic! I had won the battle, she had said MY name first! But then on Daddy's birthday (at 10 months 19 days old) Miss Kat took her first steps all alone. What a birthday present!
When Kat's first birthday rolled around, she had 3 words. We started doing baby signs with her. We would watch the "Signing Time" videos and teach her the words. We started at the table one night at a restaurant. Daddy had a cookie. I signed "cookie" and voiced the word. Daddy said and signed "cookie" back and then handed it to me. Miss Kat's eyes light up. She immediately signed "cookie"and said "ooky". Daddy handed her the cookie, and we were off!
Time passed. At 15 months Kat had the same 3 words. When we went to the pediatrician I mentioned that she wasn't gaining words. The doctor said she thought it was fine, but she had to look it up! She told me it was normal for a 15 month old to only have 3 words. I wasn't sure. We continued to sign with Miss Kat. She was picking up on the signs but she stopped voicing. There was no "moe" with her "more" sign anymore. I was very concerned. When her 18 month old check up came around, I asked the doctor again. He seemed to think she was fine. I disagreed. My family has a history of speech issues. I had speech therapy as a child (a lisp), my sister was completely non-verbal at 3. She had to learn one word at at time by touching the therapist's throat and mouth to figure out how to form words. My father showed up to kindergarten unable to speak. I knew that Miss Kat needed help, so I called Early Intervention myself. I told them that I thought my daughter needed speech therapy.
That phone call changed our lives.
An introduction, to begin?
My name is Melissa. I am 28 years old and married to a wonderful man named J.D.. We have one daughter, Katrina. She is 5 years old and headed to kindergarten. She is Deaf.
Miss Kat was born 6-3-03. We had a long and dangerous labor which ended with two failed forceps attempts and then an emergency c-section. I was unconscious for the delivery, but things did not go well. Kat was born very sick. She had passed a bowel movement in-utero and then inhaled the meconium into her lungs. Meconium is sticky and black, just like tar, and it was in her lungs. Miss Kat couldn't breath. We were told that she needed to be put on a very special machine called ECMO. ECMO stands for Extracorporeal Membrane Oxygenation. It is a heart and lung bypass machine. We were told that if she didn't get on ECMO, she would die. We later found out that they don't use this machine unless the baby has a greater than 90% chance of death without it, and still, 50% of the babies die.
Well, Miss Kat got better. She survived. She was taken off ECMO and she seemed to be just fine. There are a lot of side-effects from ECMO. Kids can have strokes, brain damage, blindness, paralysis, deafness, circulation issues, permanent lung damage such as asthma and more. But Kat was ok. When we left the hospital 6 weeks later, she was on oxygen, but very little, and was weak, but all around pretty healthy. She was doing great.
Miss Kat's first year was very normal. She had some small kidney issues, and was on the oxygen for 6 months, but otherwise was extremely healthy. She was a very strong willed baby, bossy about the things she liked and very vocal about the things she didn't! She developed just like any other baby, and at 9 months started babbling "Mamamama". I was ecstatic! I had won the battle, she had said MY name first! But then on Daddy's birthday (at 10 months 19 days old) Miss Kat took her first steps all alone. What a birthday present!
When Kat's first birthday rolled around, she had 3 words. We started doing baby signs with her. We would watch the "Signing Time" videos and teach her the words. We started at the table one night at a restaurant. Daddy had a cookie. I signed "cookie" and voiced the word. Daddy said and signed "cookie" back and then handed it to me. Miss Kat's eyes light up. She immediately signed "cookie"and said "ooky". Daddy handed her the cookie, and we were off!
Time passed. At 15 months Kat had the same 3 words. When we went to the pediatrician I mentioned that she wasn't gaining words. The doctor said she thought it was fine, but she had to look it up! She told me it was normal for a 15 month old to only have 3 words. I wasn't sure. We continued to sign with Miss Kat. She was picking up on the signs but she stopped voicing. There was no "moe" with her "more" sign anymore. I was very concerned. When her 18 month old check up came around, I asked the doctor again. He seemed to think she was fine. I disagreed. My family has a history of speech issues. I had speech therapy as a child (a lisp), my sister was completely non-verbal at 3. She had to learn one word at at time by touching the therapist's throat and mouth to figure out how to form words. My father showed up to kindergarten unable to speak. I knew that Miss Kat needed help, so I called Early Intervention myself. I told them that I thought my daughter needed speech therapy.
That phone call changed our lives.
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