I have noticed some very drastic improvements in Miss Kat's speech and spoken language in the last two weeks. She is doing great with adding the final consonants (she has always been a deleter, and it really lowers her intelligibility) and she is now adding "s" for plurals! Yeah Miss Kat! (Just a note, these were actually CID's biggest concerns. They thought if we fixed those two things Miss Kat would be come infinitely more understandable.)
So, what is the mysterious explanation for such great results in such a short amount of time? Well, I have a few theories:
First, Miss Kat did have her bilateral implant activated. It correlates with the exact time frame of these improvements.
Second, she is back in school. The difference could be because she is back in school full time.
And last, and what I think the answer truly is (though I am sure the other things helped), Miss Kat has a new speech therapist at school! As I have posted in the past, we have had some struggles with the speech therapist (read: I despise the old therapist!) I had declined speech therapy for Miss Kat last year because I believe that the former therapist is not qualified to work with Miss Kat (in fact, I had nightmares, actual nightmares about her). But this year we have a GREAT therapist! We have actually have worked with her in the past. She was a graduate student at the University where Miss Kat gets her aural rehab. So, we know that she works well with Miss Kat, I know that she is good at her job and I know who trained her and I trust her COMPLETELY!
I am very excited about Miss Kat's progress and her new therapist! Woo Hoo!
Kat Reading
Monday, September 6, 2010
Sunday, September 5, 2010
And now, a week later...
When I last blogged, I was very honest about Miss Kat's reaction to her second implant activation. I was really surprised at the reaction....actually, a better word would be disappointed. I am not really surprised by the online Deaf community anymore. I have had VERY nasty comments, accusations of child abuse, blah blah blah, and because I "showed weakness" it happened again. I wanted to be honest about my daughter's experiences with her cochlear implants, and just her life as a Deaf child, but some people see my honesty as an opportunity to attack and smear cochlear implants....C'est la vie as a hearing parent of an implanted child I suppose.
So, I wanted to update everyone who cares about Miss Kat. She is doing great now! She doesn't mind her second implant anymore. She hasn't struggled putting it on for at least a week now and she doesn't say it is loud at all. She is starting to be able to discriminate simple words with it and no longer hears the "beeping".
It was a struggle in the beginning, but honestly, it was a HUGE life event for her. She can now hear in her other ear! She had surgery and activation and now has hearing in an ear that didn't before! It's kind of a big deal! I think sometimes we forget what an impact that would have in a person's life, we (as parents) are so excited about activation and hearing that we forget what a change it is for the child, and we need to remember to be extra patient and gentle through the transition.
Miss Kat is tired a lot, listening with her new ear is a lot of work! I am glad it is still early in the school year, so there isn't a ton of work and we can focus on catching her ear up and therapy, and not fall behind in homework and stuff. She is doing great!
So, I want to say to other parents, keep going, it get better, it's worth it! You chose a CI for your child for reasons, you want them to have the opportunity to hear. There will be struggles, there will be bad days, but the good days will outweigh them. I would like to say to the doubters...I told you so :) She is happy, healthy and likes her CI and it took all of a week.
So, I wanted to update everyone who cares about Miss Kat. She is doing great now! She doesn't mind her second implant anymore. She hasn't struggled putting it on for at least a week now and she doesn't say it is loud at all. She is starting to be able to discriminate simple words with it and no longer hears the "beeping".
It was a struggle in the beginning, but honestly, it was a HUGE life event for her. She can now hear in her other ear! She had surgery and activation and now has hearing in an ear that didn't before! It's kind of a big deal! I think sometimes we forget what an impact that would have in a person's life, we (as parents) are so excited about activation and hearing that we forget what a change it is for the child, and we need to remember to be extra patient and gentle through the transition.
Miss Kat is tired a lot, listening with her new ear is a lot of work! I am glad it is still early in the school year, so there isn't a ton of work and we can focus on catching her ear up and therapy, and not fall behind in homework and stuff. She is doing great!
So, I want to say to other parents, keep going, it get better, it's worth it! You chose a CI for your child for reasons, you want them to have the opportunity to hear. There will be struggles, there will be bad days, but the good days will outweigh them. I would like to say to the doubters...I told you so :) She is happy, healthy and likes her CI and it took all of a week.
Sunday, August 29, 2010
An explanation
I want to clarify some issues that could arise about my last two posts. If you aren't familiar with CI's you could misunderstand.
First, Miss Kat WANTED her second CI. She has been begging for it for almost a year. She has been excited and looking forward to it for a long time.
Second, when a person is newly implanted it sounds weird. As your brain adjusts, the sound gets better. The first time Miss Kat put her new implant on all she could hear was beeping. She found it frustrating because she is used to a better quality signal, her OLD implant. Just in the last 5 days she has improved from hearing only beeps to being able to recognize a few simple words. She is frustrated because she wants to hear well, right now, and she is disappointed.
Third, everything seems loud to her right now. Objectively, it isn't. Her MAP is set waaaaaayyyyy lower on her new side vs the old side, but because that nerve hasn't had good stimulation for some time, it feels loud to her. The longer she uses the implant, the better the nerve and her brain will be at interpreting the signal, the more normal things will loud.
Last, pain....she isn't in pain. The shock of putting her CI on first thing in the morning isn't painful exactly...I have heard CI users compare it to walking from a dark room into florescent lights. It is shocking, and uncomfortable, but only lasts a minute. When she was first activated with the old CI, she was uncomfortable first thing in the morning as well, but it went away within a week or so. We expect that will happen again this time.
Once her CI is on, she wears it just fine. She doesn't take it off, and it doesn't bother her (except when she wear it alone, but that is because she can't understand speech with it yet, and she finds that annoying.)
Miss Kat needs to wear her CI to get it to work. The more she wears it, the better it will become, and the more she will like it. It doesn't happen overnight. It took nearly 2 years for her to get to the place she is with her first CI, and it will take that long this time as well.
I understand that not all of the readers of my blog are familiar with these aspects of cochlear implants, so I thought I would explain things so they would be clearer. I thought it was important to be honest, so that other families would know that things aren't always perfect, but that even in the dark moments, things will get better. If you have a question, ask it in the comments and I will make sure to answer.
First, Miss Kat WANTED her second CI. She has been begging for it for almost a year. She has been excited and looking forward to it for a long time.
Second, when a person is newly implanted it sounds weird. As your brain adjusts, the sound gets better. The first time Miss Kat put her new implant on all she could hear was beeping. She found it frustrating because she is used to a better quality signal, her OLD implant. Just in the last 5 days she has improved from hearing only beeps to being able to recognize a few simple words. She is frustrated because she wants to hear well, right now, and she is disappointed.
Third, everything seems loud to her right now. Objectively, it isn't. Her MAP is set waaaaaayyyyy lower on her new side vs the old side, but because that nerve hasn't had good stimulation for some time, it feels loud to her. The longer she uses the implant, the better the nerve and her brain will be at interpreting the signal, the more normal things will loud.
Last, pain....she isn't in pain. The shock of putting her CI on first thing in the morning isn't painful exactly...I have heard CI users compare it to walking from a dark room into florescent lights. It is shocking, and uncomfortable, but only lasts a minute. When she was first activated with the old CI, she was uncomfortable first thing in the morning as well, but it went away within a week or so. We expect that will happen again this time.
Once her CI is on, she wears it just fine. She doesn't take it off, and it doesn't bother her (except when she wear it alone, but that is because she can't understand speech with it yet, and she finds that annoying.)
Miss Kat needs to wear her CI to get it to work. The more she wears it, the better it will become, and the more she will like it. It doesn't happen overnight. It took nearly 2 years for her to get to the place she is with her first CI, and it will take that long this time as well.
I understand that not all of the readers of my blog are familiar with these aspects of cochlear implants, so I thought I would explain things so they would be clearer. I thought it was important to be honest, so that other families would know that things aren't always perfect, but that even in the dark moments, things will get better. If you have a question, ask it in the comments and I will make sure to answer.
The next few days
When I started this blog, I promised myself I would be honest about both the good and the bad times. This blog is about some of the bad times. I would appreciate support rather criticism.
So, where we last left off, Miss Kat has had her second CI activated and she HATES it, and doesn't want to have anything to do with it.
So, Thursday morning we wake up and start getting Miss Kat ready for school. We've explained to her that the longer she wears her implant, the better it will get. Also, her Nana promised her that if she wore her CI, she would take her to the mall to "Build A Bear" and let her pick out some clothes for her Zhu-Zhu pet. So, she wore it all day, and let us turn it up a tiny bit. But, after her shower, she AGAIN, flatly refused to put it back on. We fought, and eventually, she put it back on, but cried the entire rest of the night. Thursday night, she fell asleep with it on. (Which we liked, because then she is getting stimulation but not having to listen to the "beep beep")
When Miss Kat woke up Friday morning, she was MAD that her implant had come off during the night. (She had slept in our bed, so it stayed on for around two hours, but when she started rolling around too much, we just took it off.) She cried and told us that she had left it on so that when she woke up she wouldn't have to have that "reconnecting" moment in the morning. We felt terrible for her. Poor baby, she is trying so hard to get it to work for her...
So, Friday morning we all get up and start getting for school and work...and everything fell about. Miss Kat starting screaming again. She wouldn't put her CI, she was crying and shaking and SCREAMING at the top of her lungs. We tried reasoning, tried bribing, tried yelling, even tried forcing...it all fell apart.Miss Kat missed her bus, we all just lost it. We all cried and hugged and talked and hugged more.
We kept Miss Kat home from school Friday. She stayed home with Daddy and did a little of her summer work and just concentrated on being ok. We were extra gentle with her and let her just relax. She was even willing to watch a movie with just the second side on. I think she just needed a rest.
So, that brings us to the week-end. She has been feeling a lot better. She still struggles a little first thing in the morning, but it isn't really bad. (She was uncomfortable for the first two weeks or so with the first implant too.) We bought her a Hello Kitty backpack to bribe her into "putting it on in the morning without a fight" for two weeks.
Things are looking better, but for a few days things were very dark. We experienced a very trying time, and were very frustrated and scared. We are all still recovering and we have high hopes that things will continue to get better.
So, where we last left off, Miss Kat has had her second CI activated and she HATES it, and doesn't want to have anything to do with it.
So, Thursday morning we wake up and start getting Miss Kat ready for school. We've explained to her that the longer she wears her implant, the better it will get. Also, her Nana promised her that if she wore her CI, she would take her to the mall to "Build A Bear" and let her pick out some clothes for her Zhu-Zhu pet. So, she wore it all day, and let us turn it up a tiny bit. But, after her shower, she AGAIN, flatly refused to put it back on. We fought, and eventually, she put it back on, but cried the entire rest of the night. Thursday night, she fell asleep with it on. (Which we liked, because then she is getting stimulation but not having to listen to the "beep beep")
When Miss Kat woke up Friday morning, she was MAD that her implant had come off during the night. (She had slept in our bed, so it stayed on for around two hours, but when she started rolling around too much, we just took it off.) She cried and told us that she had left it on so that when she woke up she wouldn't have to have that "reconnecting" moment in the morning. We felt terrible for her. Poor baby, she is trying so hard to get it to work for her...
So, Friday morning we all get up and start getting for school and work...and everything fell about. Miss Kat starting screaming again. She wouldn't put her CI, she was crying and shaking and SCREAMING at the top of her lungs. We tried reasoning, tried bribing, tried yelling, even tried forcing...it all fell apart.Miss Kat missed her bus, we all just lost it. We all cried and hugged and talked and hugged more.
We kept Miss Kat home from school Friday. She stayed home with Daddy and did a little of her summer work and just concentrated on being ok. We were extra gentle with her and let her just relax. She was even willing to watch a movie with just the second side on. I think she just needed a rest.
So, that brings us to the week-end. She has been feeling a lot better. She still struggles a little first thing in the morning, but it isn't really bad. (She was uncomfortable for the first two weeks or so with the first implant too.) We bought her a Hello Kitty backpack to bribe her into "putting it on in the morning without a fight" for two weeks.
Things are looking better, but for a few days things were very dark. We experienced a very trying time, and were very frustrated and scared. We are all still recovering and we have high hopes that things will continue to get better.
Activation #2
I waited awhile to post this because I wasn't sure where we were going to end up. Things didn't go the way we assumed they were, so we didn't know how this post would end, so I waited...but I feel ready now, so here we go!
Wednesday morning we picked Miss Kat up from school and took off on the two hour drive to her audiologist. We were all very excited, especially Miss Kat (because she gets to go to the local creamery and get homemade ice cream after audiology appointments).
So, we hooked her up, did the NRI's, set the T and M levels and got a nice MAP all set up. Then the audiologist lowered the volume and set three MAPs for us to slowly work up through. Then he turned the mic on to "go live".....and all hell broke loose! Miss Kat ripped the CI off her ear and SCREAMED. Ok, that happens sometimes, he turned the volume all the way down and we had her put it back on. When she put it back on, she was ok with it, but she didn't let him turn it up anymore.
So, we took it off, and the audiologist programmed it and the back up and handed it back to us. Miss Kat REFUSED to put it back on. She screamed and cried and even hit us! Wow, we were NOT prepared for this...(her first activation went really well and she liked her CI, right from that first day). So, we argued, and pushed, and bribed and scolded...and nothing worked. She would start to put it on and then FREAK OUT and refuse.
It was insane! She already has one CI, it works great, and she has been using a hearing aid in that ear nearly her entire life! How different must the signals be to her! So, eventually, after about 15 minutes we scoop up all our stuff and leave the audiologist's office. His job was done, there was no reason for him to stick around.
So, we go out into the hall and lobby and argue and fight and bribe some more. Eventually, she puts the implant on, sobbing. She tell me that she "can't hear" with it, and it's "beeping". We promise her that if it still hurts after 5 minutes, she can take it back off. But she leaves it on while we head over to get some ice cream. After 8 minutes she says "I can hear with (this) ear!". Oh good, maybe things are improving!
On the way home we stopped at a playplace so Miss Kat could get french fries (one of our bribes) and to avoid rush hour traffic on the way home. She was awful the entire time. She was mad and complained that it was too loud in there, and even took the implant off while we were there. It was a fiasco.
As we were leaving we offered to rent her a Red-box movie for the rest of the drive home. She picked one out, but as soon as we tried talking to her again, she started SCREAMING and throwing another fit. She starting crying and complaining about the "beeping" again. I called her name, she ignored me, again and again and again. I got super frustrated, and tapped her...turns out her other battery had died and she had just been using the new implant for awhile...argh. I felt terrible.
So, we put on her spare battery and headed home EXHAUSTED. We were completely unable to turn the volume of the programs up at all. We struggled getting her to go to bed, it was all around a DISASTER, and we knew, in the morning, we would face the exact same thing again...
Wednesday morning we picked Miss Kat up from school and took off on the two hour drive to her audiologist. We were all very excited, especially Miss Kat (because she gets to go to the local creamery and get homemade ice cream after audiology appointments).
So, we hooked her up, did the NRI's, set the T and M levels and got a nice MAP all set up. Then the audiologist lowered the volume and set three MAPs for us to slowly work up through. Then he turned the mic on to "go live".....and all hell broke loose! Miss Kat ripped the CI off her ear and SCREAMED. Ok, that happens sometimes, he turned the volume all the way down and we had her put it back on. When she put it back on, she was ok with it, but she didn't let him turn it up anymore.
So, we took it off, and the audiologist programmed it and the back up and handed it back to us. Miss Kat REFUSED to put it back on. She screamed and cried and even hit us! Wow, we were NOT prepared for this...(her first activation went really well and she liked her CI, right from that first day). So, we argued, and pushed, and bribed and scolded...and nothing worked. She would start to put it on and then FREAK OUT and refuse.
It was insane! She already has one CI, it works great, and she has been using a hearing aid in that ear nearly her entire life! How different must the signals be to her! So, eventually, after about 15 minutes we scoop up all our stuff and leave the audiologist's office. His job was done, there was no reason for him to stick around.
So, we go out into the hall and lobby and argue and fight and bribe some more. Eventually, she puts the implant on, sobbing. She tell me that she "can't hear" with it, and it's "beeping". We promise her that if it still hurts after 5 minutes, she can take it back off. But she leaves it on while we head over to get some ice cream. After 8 minutes she says "I can hear with (this) ear!". Oh good, maybe things are improving!
On the way home we stopped at a playplace so Miss Kat could get french fries (one of our bribes) and to avoid rush hour traffic on the way home. She was awful the entire time. She was mad and complained that it was too loud in there, and even took the implant off while we were there. It was a fiasco.
As we were leaving we offered to rent her a Red-box movie for the rest of the drive home. She picked one out, but as soon as we tried talking to her again, she started SCREAMING and throwing another fit. She starting crying and complaining about the "beeping" again. I called her name, she ignored me, again and again and again. I got super frustrated, and tapped her...turns out her other battery had died and she had just been using the new implant for awhile...argh. I felt terrible.
So, we put on her spare battery and headed home EXHAUSTED. We were completely unable to turn the volume of the programs up at all. We struggled getting her to go to bed, it was all around a DISASTER, and we knew, in the morning, we would face the exact same thing again...
Monday, August 23, 2010
Funny story from last week
So, we went to a birthday party for one of Miss Kat's friends last night. My husband and I were the only hearing people at the party. There had been some kind of mix up with the reservation (we were at a Chucky Cheese type business) and they were writing back and forth, trying to figure it out. At the same time the employee said "Wait a minute, we have someone who signs..." and goes off to find that person. (We all, of course, roll our eyes because that means that someone here once learned how to fingerspell from Sesame Street) So, the mom said again, "No, let's just write and finish this".
So, we finally get everything settled and into our party room. They write on the wipe board "If you need anything, let us know". So, the party goes on, and the board works well, they get soda and pizza, kids are having a good time. About an hour later, the party host figures out I can hear She walks up to me and says "Can you ask them if they want the pizza boxed up?" and I say back "Yeah, you can write that and she'll answer you." The party host looked dumbfounded, but wrote it on the board.
The mom and I just laughed! I am sure the poor 15 year old has no idea why I wouldn't speak and make this easier for her, but if the mom had wanted me to interpret, she would have asked me (she has in the past) and really, she grew up totally oral, so if she had wanted to speak, she would have done it herself!
So, we finally get everything settled and into our party room. They write on the wipe board "If you need anything, let us know". So, the party goes on, and the board works well, they get soda and pizza, kids are having a good time. About an hour later, the party host figures out I can hear She walks up to me and says "Can you ask them if they want the pizza boxed up?" and I say back "Yeah, you can write that and she'll answer you." The party host looked dumbfounded, but wrote it on the board.
The mom and I just laughed! I am sure the poor 15 year old has no idea why I wouldn't speak and make this easier for her, but if the mom had wanted me to interpret, she would have asked me (she has in the past) and really, she grew up totally oral, so if she had wanted to speak, she would have done it herself!
Sunday, August 22, 2010
Post-op #2
Miss Kat had her post op yesterday. It is the last step before activation!! The surgeon just wants to take a look at the incision, make sure everything is healing well before he gives the OK for activation.
(I was not at the appointment, so the entirety of this post is from the report of Hubby)
The first person that came to see Miss Kat was the surgeon's medical assistant. She asked how Miss Kat's recovery went and took a look at the healed incision. She noticed that there was a little stitch still there. It had been covered by a little scab, so it never healed. The assistant wanted to just remove the stitch (should just take a sec), so we told Miss Kat and all hell broke lose! She was pretty sure that she would die from the removal...slowly and painfully! (I didn't write about it, but we had a HUGE struggle getting the steri-strips off as well. They were supposed to come off themselves after a week, and that just didn't happen, so eventually (after more than two weeks) we had to take them off, and Miss Kat FREAKED out!)
So, Miss Kat tries to be brave and let her remove the stitch, but she was genuinely scared, so no progress is made. Miss Kat tries to sit and let her do it, but every time the assistant even comes close to touching her, she pulls away and cries. Then Daddy sits and tries to hold her head to let them get the stitch out....and that doesn't work either. The assistant leaves and gets another nurse and the three of them try to hold Miss Kat down and get the stitch out (just a note, if I had been there, this would have never gotten this far, NO ONE holds my kid down unless there is a serious issue...I think this could have been handled better). They fail....so they give up and say screw it, let the doctor do it!
So, then the surgeon (eventually) comes in. He walks in and says "Heard there was some trouble". He says that he thinks the stitch will come out on it's own and not to worry about it! Argh...So, he takes a peek at Miss Kat's ear and everything looked great. He gives us the go ahead for activation and he hopes to never see us again!
So, we have the new processors, the batteries are charging, and we are headed up on Wednesday! Bionic Miss Kat will hear in stereo!
(I was not at the appointment, so the entirety of this post is from the report of Hubby)
The first person that came to see Miss Kat was the surgeon's medical assistant. She asked how Miss Kat's recovery went and took a look at the healed incision. She noticed that there was a little stitch still there. It had been covered by a little scab, so it never healed. The assistant wanted to just remove the stitch (should just take a sec), so we told Miss Kat and all hell broke lose! She was pretty sure that she would die from the removal...slowly and painfully! (I didn't write about it, but we had a HUGE struggle getting the steri-strips off as well. They were supposed to come off themselves after a week, and that just didn't happen, so eventually (after more than two weeks) we had to take them off, and Miss Kat FREAKED out!)
So, Miss Kat tries to be brave and let her remove the stitch, but she was genuinely scared, so no progress is made. Miss Kat tries to sit and let her do it, but every time the assistant even comes close to touching her, she pulls away and cries. Then Daddy sits and tries to hold her head to let them get the stitch out....and that doesn't work either. The assistant leaves and gets another nurse and the three of them try to hold Miss Kat down and get the stitch out (just a note, if I had been there, this would have never gotten this far, NO ONE holds my kid down unless there is a serious issue...I think this could have been handled better). They fail....so they give up and say screw it, let the doctor do it!
So, then the surgeon (eventually) comes in. He walks in and says "Heard there was some trouble". He says that he thinks the stitch will come out on it's own and not to worry about it! Argh...So, he takes a peek at Miss Kat's ear and everything looked great. He gives us the go ahead for activation and he hopes to never see us again!
So, we have the new processors, the batteries are charging, and we are headed up on Wednesday! Bionic Miss Kat will hear in stereo!
Subscribe to:
Posts (Atom)