Kat Reading

Kat Reading

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!

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.

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??


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!

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!

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!


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.

Thursday, November 20, 2008


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.

Monday, November 10, 2008


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.

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.

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!

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!


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.

Sunday, November 2, 2008


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.

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!