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.

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.

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...

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!

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!

A.......meeting

We had a meeting yesterday. It wasn't an official IEP meeting (because we wrote an IEP in Feb. so it isn't due for a long time) but I wanted to share Miss Kat's test results and meet the staff she will be working with (her school is under going MAJOR changes, including a major overhaul of staff). I met the new director of the oral program as well as Miss Kat's new teacher. 

This year Miss Kat's deaf class will only have 4 kids, so the school decided to combine the first and second grades together. I am less than pleased about that. I am wondering how the teacher will be able to teach both curriculum as well as provide an acoustically reasonable classroom (ie how will the kids be able to hear if there are two classes going on at the same time). I HATE group work for Miss Kat, she really struggles to hear when there is that much noise....but hopefully the second CI will help.

We also discussed therapy. Miss Kat will be receiving AV therapy everyday for 30 minutes as well as parent child therapy (with me) once a week. That is great news, because normally the school stops parent child therapy after first grade (though I don't understand why, it can only be helpful).

I have big worries about this year, but I continue to be hopeful. I think we have pretty good goals written, and good therapy set up (both in school and out), so I hope Miss Kat will continue to make great progress (but if not, I will not hesitate to pull her out and homeschool!)

MAPing

While we were at CID we had their audiologists take a peek at Miss Kat's MAP. They thought that she needed a tune-up, so they got to work. They changed Miss Kat's program from Hi-Res P to Hi-Res S (moving from paired to sequential). When I asked them why they used Hi-Res S instead of P, they said "Because it seems to work for the kids"....that isn't very specific....so, I asked Miss Kat's regular audiologist why he chooses to use P and he told me that the research shows that adults prefer P and since kids can't express which sounds better, he tries to MAP them with the specifications that adults prefer. (AB users, what are you, or your child using? And why?)

So...we switched Miss Kat to CID's MAP and waited...she HATED it! She wasn't able to express "This MAP sounds weird", but I got a whole lot of "WHAT YOU SAY?!?!" and "I don't know what you saying", and had some behavioral issues, and ended up crying really hard the one night. So, we had to switch back to her old MAP. (Also, our audi was so curious about the S vs P that he had an adult AB user come in and after he finished his MAP he switched the program from P to S and asked the user what they thought. He said that they reported that the sound quality was much poorer and said it "sounded gravely"...just food for thought....but actually, how cool is our audi to do that?!? He really wanted to know which sounded better so he could program Miss Kat as well as possible. He is the best!)

That was the last few days at CID, and now tomorrow we are headed to the audi for a tune up. I've been trying to take notes on what Miss Kat is, and isn't hearing. She is struggling a little with hearing "S" at the end of words (plurals) and she can tell I am making a sound for "f" and "th", but she just blows air out of her nose when asked to make the sound. We are going to get her hearing the best she can since she doesn't have her hearing aid, and there is still two weeks until activation...(soooooo counting down!)

Overall, Miss Kat is doing great. She is happy and healthy and just having a great summer!