Jazzie and Tahlia

Jazzie on the news

Ohio Valley Voices

You have heard me talk about Ohio Valley Voices for many years. The school has been instrumental in Jazzie's successful transition into the hearing world and we are forever indebted to them. It still amazes me at times that out of all the forever families in the world, Jazzie found her way to a family who practically had a school like Ohio Valley Voices in their back yard. If that wasn't meant to be, I don't know what is.

Here is a new video about Ohio Valley Voices. The director of the school explains what the school does much better than I ever could and the parents featured in the video represent other parents like Matt and myself. The pain they describe upon finding out that their child was deaf, the hope they found when they discovered Ohio Valley Voices, the joy they felt when their child started to talk and the gratitude they hold is something we ALL feel.

Please consider making a donation to this amazing school; the program relies on donations to survive. As you know, I am running the half marathon in just 11 days to help raise money so that other children like Jazzie can have the same oportunities she has been given. Jazzie and Tahlia will participate in the kids marathon. Your donation is 100% tax deductable and can be made on-line here. Just enter Team Peffly in the comment section.

Jazzie's interview

Jazzie was interviewed by a local news station as part of a story about Ohio Valley Voices. Of course we were thrilled to participate just to get the word of the school out into the community. To this day not everyone knows that this school exists in the Cincinnati area and we want to change that! Everyone needs to know that deaf children are able to hear AND talk with the help of cochlear implants and schools like Ohio Valley Voices.

Getting the microphone on:

Jazzie is being instructed to talk in a clear voice and to look at the interviewer, not the camera ;-)

Ready to go:

Jazzie didn't disappoint and did amazingly well. She was nervous at first, but after the first question her nerves disappeared. The interviewer commented on how well she answers questions. Whenever Jazzie answers a question (any question asked by anyone for that matter), she always repeats part of it. For instance, when the news man asked her what she liked about Ohio Valley Voices, she responded: "What I liked about Ohio Valley Voices is...." She always does this and this is due to her years of training at Ohio Valley Voices where the kids are always expected to repeat the question back to make sure that they understood it correctly. He said she was an interviewer's dream :-) Add to that the fact that the entire crew could not believe that she was deaf and I would say that this was a success. The interview was taped at Ohio Valley Voices and it was so special to see her sitting in the same classroom where all the magic once began :-)

Jazzie has come so far and we are beyond proud of her!

Oh, how I love this!

Hearing Birthday

Today is Jazzie's Hearing Birthday. Eight years ago, her first cochlear implant was activated and Jazzie heard her very first sound. She has come a long way since then. We've seen her go from a 16 month old girl with absolutely no speech or hearing abilities, to a normal, almost tween (!!!!), girl. 

I've used every adjectiev imaginable to describe Jazzie's journey: amazing, miraculous, astounding, unbelievable... But none of them truly capture how I feel. My deaf daughter is talking just like any other girl her age and can hear within normal limits with her cochlear implants. People that just meet her, have no clue she is deaf. Jazzie, truly is amazing.

January 3, 2004 - The audiologist is getting everything in place before turning on the device:

Her very first sound ever:

When Jazzie first got her cochlear implant, the processor was so much larger than it is now. She actually carried it on her back in a harness for a long time.

You can see how large her backpack was in this picture. When Jazzie first got her device, they didn't have a black magnet for her, so she wore a brown one until the black one was back in stock. The magnet is so visible not only because it's brown, but because Jazzie's hair hadn't grown back yet.

Jazzie certainly has come a long way, but so has the cochlear implant processor. She no longer wears her processor on her back, the entire device now fits snugly behind her ear (like a large hearing aid). Jazzie actually wears an older model; the newer ones are even smaller than what she has now. We will probably upgrade to those in a few years when we are eligible for the upgrade and our insurance will cover them ;-)

To celebrate, I had brownies waiting for Jazzie when she got home from school.

Speech therapy

Jazzie has been in speech therapy since she got her first cochlear implant at 16 months of age. We used to go to Children's Hospital twice a week for therapy and our local Early Intervention Program came to our house at least three times a week. When Jazzie turned three, she started at Ohio Valley Voices, which really was like all day speech therapy. When she mainstreamed into first grade, she continued to receive speech therapy at school.

We are currently down to only 20 minutes of speech therapy twice a week, but lately Jazzie has been saying that she is not happy with the fact that she still has to go to speech at school. She does not like to miss ANY class time, even though she gets pulled out during silent reading time or lesson reviews. She never misses anything new or unknown to her.

Despite the fact that Jazzie is deaf in both ears and has bilateral cochlear implants, her speech is amazing. It really is. More than anything, Jazzie needs help with vocabulary. Her vocabulary is weak compared to her hearing peers, which is typical for hearing impaired kids due to the lack of incidental hearing.

More and more Jazzie wants to be like her peers. She wants to dress like them, talk like them and she wants to stay in class with them without being pulled out.

I was explaining to Jazzie how the speech pathologist at school is helping her learn new vocabulary and how to pronounce new words correctly.

Her response: "My pronouncian is just fine". 

:-)

3 years

Three years ago on this day, Jazzie had her second cochlear implant surgery. She was so nervous and scared (as was I), but we also knew that being able to hear in her other ear would be so beneficial... It certainly wasn't easy when she first woke up and there was some temporary paralysis on the left side of her face. It's still hard to see her this way:

But Jazzie bounced back quickly, and by the following day she was almost back to feeling normal. She had a hard time getting used to her second cochlear implant at first. She hated wearing it, because nothing sounded clear and she simply could not make sense of any sounds. However, over time she has learned to accept it. I won't say that she loves it, because if it was up to her she would just wear her first one. She still says it "buzzes" when she first puts it on, but after a few minutes that goes away. She can hear SO much better when she is wearing both processors and her ability to localize sounds has improved tenfold. To this day her right ear is her dominant one and probably always will be, but the two cochlear implants together work amazingly well. 

Last week Jazzie was at the orthodontis and needed to have an x-ray taken. I think it's so cool how you can see her cochlear implants:

It still amazes me how Jazzie is not able to hear ONE SINGLE THING without her processors, but as soon as she puts them on her head and they make contact with the things implanted in her head, she can hear.

Medical technology is awesome.

"Super powers"

I was explaining to Jazzie that since she lost her hearing, her other senses work better than most people. She is very good at those Hidden Picture puzzles (spies items before anyone else), she can taste flavors that are every so slight and her sense of smell is amazing.

After talking about it she turned to me and said: "Here's a secret, mom. I'd give up all those super powers if I could have my hearing".

Sigh...

Jazzie and Sophie - together again

Jazzie and Sophie have been best buddies since they were 18 months old at Ohio Valley Voices. They were together ALL day, every day. Now that the girls have each transitioned into their own school districts, they don't see each other nearly enough, but we try to get together when we can. Sophie came over on Saturday and as usual, the girls picked up right where they left off the last time...

When I sometimes think how devastated I initially was upon learning that Jazzie was deaf, it almost seems silly. Ironically, I think that Jazzie's deafness has given her (and our entire family) so much MORE. Her other senses are heightened, she can shut out the world when she needs to and probably most importantly, her friendships with other OVV students; Sophie in particular.

These two talk about moving in together when they get older, and at the rate they are going, I can totally see that. A modern day Laverne and Shirley :-) 

One more week

(Side note: why do these video stills always make my face look ridiculous???)

I am proud to say that when I signed up for the marathon training through Ohio Valley Voices, I agreed to try and raise at least $250 for them. I am proud to say that I have raised $1,220! I want to thank everyone who has donated in my name. I appreciate it SO very much. All the money raised will be used towards teaching children like Jazzie to talk and to understand when being spoken to. My wish is for every child with cochlear implants to have the same success that Jazzie has been able to have.

Thank you!!!!!

Deaf child at play

An "off day"

I ran 17 miles during training this past Saturday; the most miles I have ever ran. It was also my most difficult day during my training so far. I felt so good the week before when we did 16 miles, but I was not feeling the love this past Saturday. My legs were SO tired and around mile 12, I really hit a wall. In fact, the other people in my group started calling me sailor, since I was saying a few choice words ;-)

I was really struggling and wanting it to be over so badly. Then we came across the building that used to house Ohio Valley Voices. I recently blogged about my emotions when I ran by it for the first time in a long time during one of my other training runs. It was very emotional. So when we ran by it again this past Saturday I had a little moment and cried. I cried because I was so tired and knew I still had about 3 more miles to go; I cried because of all the memories coming back; I cried because I wanted to be DONE. I had to dig really deep to keep going. But then I thought about all the times that we've pushed Jazzie. All the things she's had to endure to get to where she is today...

Her first surgery:

Countless of doctor's appointments afterwards:

Hundreds of hours of speech therapy and aural rehabilitation:

All the times Jazzie fell asleep on the floor, on the couch, in the car and everywhere in between because of getting used to and being overstimulated by her cochlear implant:

Being exhausted because of her brain getting used to all the different sounds:

And still we pushed her. We decided on a second cochlear implant even though Jazzie cried over it because she was so afraid...

I thought of all of that on Saturday and how we have been pushing her for years. And that is when I dried my tears, told myself to suck it up and to keep going. I told myself that if Jazzie can go through all of this, I can run for three more miles. Giving up on Jazzie has never been and never will be an option. Giving up on finishing my miles was not going to be either, so I got myself together and ran the remaining 3 miles.

This Sunday is my first official half marathon and by God, I am going to finish it.

Random pictures

Jazzie at the orthodontist (to her relief it is still too early to do anything. However, it might be as early as this summer that something will be done)..

Jazzie wanted me to take a picture of her hair, which she was really digging that day:

Tahlia in her sassy pants:

Tahlia and her best buddy R. at school, right after lunch and right before recess:

Jazzie's answer to the fill in the blank "I wish the class could just be ____________":

I told you she has a hard time hearing in noisy environments!

However, she may not be able to hear well, but she sure can speak well. I posted a video of her on FB the other day, but wanted to post it here as well, since I am often asked to post speech samples from Jazzie by people who are considering cochlear implants for their children or who are just curious as to what Jazzie sounds like:

"Hey guys, look what I can do!"

Jazzie's teacher stopped me in the hall last week when I was volunteering at school to let me know that during a fire drill (during which everyone complained about how loud the alarm was), Jazzie called out to the other kids: "Hey guys, look what I can do!". She then flicked her magnets of her head, put her hands on her hips and proudly told everyone she "did not have to listen to that annoying sound anymore".

After listening to Jazzie complain about her cochlear implants, it is nice to know she still has a sense of humor about them :-)

Some chit chat

To sign or not to sign

Over the years of having this blog, I have gotten a lot of e-mails from people who have been inspired by Jazzie and her cochlear implants. I know that my blog will often come up when people are researching hearing impairment and cochlear implants. I also know that not everyone agrees with our decision to give Jazzie bi-lateral cochlear implants. I am not going to get into a debate on whether or not cochlear implants are right or not. I think you all know how our family feels about this. 

As you know, Jazzie went to Ohio Valley Voices, which is an oral deaf school. What that means is that the students (who are ALL hearing impaired) are taught to speak and to listen. There is absolutely NO sign language. There is an argument that if you teach children with a cochlear implant to sign, that they won't speak (or maybe not as well or as quickly). Sign language is a lot easier than speaking, so some experts say that using sign language will hinder a child's progress in acquiring speech. We were encouraged not to sign with Jazzie when she first started on her cochlear implant journey. And for as much as I love Ohio Valley Voices and other oral deaf schools like it, I disagree with that philosophy. We have been signing with Jazzie since the day we first met her in China and we still do. Upon learning that Jazzie was deaf, I immediately signed up for American Sign Language classes at our local university. Before Jazzie was two years old, she had a sign vocabulary of about 400 words. And even though we don't sign as much as we used to, we still do. It is unrealistic to expect me to never sign with my daughter who is still a deaf child. I mean, there are times when we simply have to, because there is no other way of communication. When her processors are off when she is swimming, in the bath tub, in the shower or at bed time, she cannot hear anything so we use ASL. 

I think that any professional/expert who listens to Jazzie's speech and takes a look at her overall progress with her CI's can see that us using ASL from the time that she was a baby has not hindered her in the least. I guess I wanted to publicly say on this blog what I don't think I have ever said before. We went against what professionals told us to do at the time. 

If you are reading this blog because you are trying to get information on cochlear implants and an oral deaf education for your child, I am here to say that you can still use American Sign Language AND be a successful speaker and listener. My Jazzie certainly is. Here is a clip of her reading Green Eggs And Ham by Dr. Suess. Her reading level is way beyond this, but I wanted to showcase her speech as best as possible. Towards the end she uses some funny intonations and facial expressions. She makes me laugh, that girl :-)

Problem solved

As Tahlia and the other kids were playing on the slip 'n slide yesterday, Jazzie was just standing there; just watching them. I asked her why she wouldn't go ahead and put her bathing suit on so that she could play as well. I knew she was apprehensive because of the fact that she would have to take her cochlear implant processors off, but I wanted to see what Jazzie would say. She stood there for a moment, started to cry and said that she wouldn't be able to hear what the kids were talking about. "I just hate being deaf!" she shouted and ran inside. It hurts me me to see my girl like this; it really does :-(

I did some quick thinking and decided to stick her processor in a ziplock bag and stick it to her head with a bandage. Her processors are somewhat water resistant, but it still makes me nervous to get them wet so we do not take any chances. I just wanted my girl to not feel like an outsider.

Look at that smile! She was so happy about it :-)

We did have to switch to a bigger bandage, but otherwise our problem was solved and I loved seeing the happy smile on Jazzie's face :-)

A+

I got this shirt for Jazzie last year. When I saw it, I just thought it was so appropriate for her. However, last year she would not wear it. She thought it was "too embarrassing", because it was too big. This year on the other hand, it fits her nicely and when Jazzie saw it in her closet earlier today, she wanted to wear it. 

I talked a little bit to Jazzie about why I thought this shirt was so perfect for her. When I first found out that Jazzie was deaf, I didn't think she would ever talk. Then, after she received her cochlear implants, I wasn't sure how well she was going to talk.

Never in my wildest dreams did I imagine that Jazzie would end up speaking so clearly that people don't even realize she is deaf upon meeting her.

I hope that Jazzie understands how proud I am of her. This shirt may just be a cute/funny shirt to her, but when I see her wearing it I am filled with pride and amazement at how much she has accomplished.

Field Day

There are only 4 more days of school left! Today is Field Day. 

Look at my sassy Jazz - she is ready for it!

 
(I know her shirt looks weird, but I felt the need to blur out the name of her school).

 

I have always helped out at school whenever Jazzie has had Field Day. There will be water activities and of course she will have to take her cochlear implant processor off. This year I decided that Jazzie needs to be responsible for it herself. She is more than capable and ready, it is ME who sometimes has a hard time letting her go and letting her be more independent. I need to let her know that I trust her and that I believe in her.

She is growing up, but I don't always like it :-)

Black and White/Memory Wednesday

It was exactly 7 years ago that we were in China for Jazzie. I was thinking that this may even be the anniversary of the day of Jazzie's medical exam in Guangzhou. I am not exactly sure of the date. I looked back at my pictures of our trip and there are no pictures for May 20 at all, so there is a good chance that the anniversary might actually be tomorrow. The day of her medical exam was difficult and emotional, so I don't think I was in a mood to take any pictures. I mentioned Jazzie's medical exam in this post, and I thought I would do a post on how I suspected there was a hearing loss.

I knew the first day that Jazzie was deaf. I really did. Over the years I have met many parents of deaf children who didn't find out their child was deaf until they were older. Sometimes it took years for them to realize it. I do not understand how that is possible, because I KNEW that first day. The moment we got Jazzie, she was really calm. She never cried; she just looked around. She was also very quiet. I didn't think much of it until we got to the hotel room and started interacting with her. I noticed that she wasn't really interested in anything that made sounds. I noticed she never looked up whenever there was any kind of noise. She never turned her head towards any sounds. At the time I thought it was strange and I remember thinking that there might be a hearing problem. On the other hand, I also realized that her life had just been turned up side down and that Jazzie might just be shutting down to deal with her grief. The suspicion stayed in the back of my head and for the first couple of days I didn't say anything. Not even to Matt. I kept doing little "experiments" to see if she could hear and they failed every time. By day three I knew for sure there was a problem. I told Matt about it and after doing some more "experiments", he agreed.

The thing is that we really didn't care at the time. NEVER for a single moment did we consider mentioning anything to our guide. Our biggest fear was that if we were to say anything at all, that we were not going to be able to keep Jazzie because we were not approved in our homestudy to adopt a special needs child. So we kept on going as if nothing was wrong. As the days went on I did worry about what kind of life Jazzie was going to have. I knew nothing about cochlear implants at the time and my biggest worry was how she was going to be able to communicate with our family. In our e-mails and phone calls from China, we never said anything to anybody. All we wanted to do was get Jazzie home so that we could see what kind of hearing loss she had and what we were going to be able to do about it. I was hoping at the time that she might simply have fluid or wax in her ears that prevented her from hearing. Whatever the case would be, we did not care. We loved her and wanted her home.

Then the day of the medical exam came. I remember being nervous that day. I was already on edge all the time because of SARS and now I was worried that people were going to find out about Jazzie's hearing loss and what the consequences were going to be. I sat down with Jazzie on my lap and a doctor shook a rattle next to Jazzie's ear. Nothing. He shook the rattle on the other side and once again: nothing. I saw the look of confusion/concern on the doctor's face and I knew that Jazzie wasn't going to pass the test. After doing some more tests of making noises for Jazzie and getting absolutely no response from her, the doctor went over to what I assume was a supervisor. Before I knew it, there were about half a dozen people surrounding us. They were all talking to each other, shaking things by Jazzie's ears and talking to our guide. I clearly remember one of the doctors asking me: "Do you think this baby can hear?". I simply answered: "I am not sure". I was darn sure that she could not, but I was afraid to say those words. I was scared to death they were going to take her from us. At this point our guide took us aside and asked if we still wanted Jazzie. I started to cry. Of course we still wanted her. Our guide said he would have to talk to the director of our agency and the rest is kind of a blur. I remember walking back to the hotel crying. Our travel mates were in shock and didn't really know what to say, but were very supportive. 

Back at the hotel our guide once again asked us if we wanted to keep Jazzie. I also remember him saying that we could have another baby by the next day. Once again, I started to cry. I think it might be at this point that I got angry and told him that I did not want anybody asking me that question again. I wanted Jazzie and Jazzie only. That evening, back in the hotel, we got a phone call from the director of our adoption agency. Matt took the call and I heard him say: "You don't even have to ask me the question". He later told me that the director told him that he knew what our answer was going to be, but that he had to ask. After he heard directly from us that we wanted to keep Jazzie, he got in contact with our social worker. She wrote a home study addendum stating we were approved for a special needs child and faxed it to China. The following morning Matt took the addendum along with our other paperwork to the US Consulate. At the time, only one parent was allowed to go the consulate, so Jazzie and I stayed behind at the hotel. When Matt walked through the door with Jazzie's visa, I cried again. This time they were tears of relief.

It was such an emotional time, but tell me: how could we possibly NOT want to keep this girl?

Thanks to my husband Matt for filling in the blanks I was having in the comments section below ;-)

To see more wonderful black and white photo's, go here:

Black and white/Memory Wednesday

Yesterday Alex sent me a text asking me to e-mail him the picture of Jazzie "when she was really young, with a flower dress and hat and where she looked tooooo adorable". He also mentioned it was a "famous Jazz picture". Now I have taken thousands of pictures of the girls over the years, but I knew exactly which picture he was talking about...

 

It is one of my all time favorites. Here are some more from that series:

 

Sigh.... she really was too adorable. She is about 11 months in these pictures. We had been home for about 6 weeks and in the middle of trying to figure out where we were headed with Jazzie's hearing loss. We had no idea then how Jazzie was going to do with the cochlear implants she eventually received, but we didn't care. We were just so happy and lucky to have her in our lives and that has not changed one little bit.

Funny reaction

It seems that people couldn't view Jazzie's video I posted yesterday. It should work now.

And please excuse Jazzie's constant wiping of her nose. Her allergies are really acting up.

Homework

So I got a Flip and I've been playing with it, hence yet another video :-)

In this video Jazzie is working on her spelling homework. She almost always gets challenge words instead of the regular list of words for that week. On Monday, the kids take a test on that week's spelling words. If they already know how to spell all of them, they get the challenge words, which really are quite a bit more difficult. Yesterday Jazzie said: "Why do I always have to get my regular words right?" She has yet to figure out that if she misses just one word on purpose, she does not have to do her challenge words. Of course, I am not saying anything!

I am also posting this video for those who have e-mailed me lately about Jazzie's speech. I will take another video of her to give you an even better idea of her speech, but I think you can tell from this video that she has done well with her cochlear implants, even though she has some trouble pronouncing the word "precipitation" :-)

Monday almost started off so wrong

This day could have started out in a really bad way:

 

I almost washed Jazzie's cochlear implant processor. Oops. BIG oops....

However, spring break is here and it is going to be a fabulous week!

A conversation

Jazzie: Mom, does the Wishing Star really work?  

Me: Well sure, I always make a wish when I see it.

Jazzie: I don't think it works at all.

Me: Why do you say that?

Jazzie: Because every time I see the Wishing Star I wish that I wasn't deaf and I still am, so I don't think the Wishing Star is real.

Me (hugging her tight): I know sweetie, but if you weren't deaf I wouldn't have you and you would not be the Jazzie that we all love so much. I wouldn't want to change anything.

Jazzie: Mom! So are you wishing that I stay deaf?

Me (a bit bewildered and frantically searching for the "right" answer to give): No, I just know that your ears are not working correctly and the doctors can't fix them.

Jazzie: The next time I see the Wishing Star I will wish that Dr. Choo can fix my ears. Do you think that wish might work, mom?

....SIGH....

Sniff :-(
 

A reminder

The other day I got a phone call from Jazzie's old school with the results of the annual testing they perform on their graduates. Even though all of Jazzie's scores were still within normal limits compared to her hearing peers, they have gone back from last year. Instead of scoring well above average, Jazzie is now scoring within normal limits. This is obviously a concern, yet typical of hearing impaired children who have mainstreamed. I was told that about two years after graduating OVV, children tend to slide backwards some, because they are not keeping up with learning new vocabulary.

After the phone call, I started wondering if this has something to do with the fact that Jazzie has been less than happy about doing her spelling homework. Her spelling homework consists of 15 words. Jazzie usually ends up with challenge words, because she usually gets all the regular spelling words right. She then has to write each word twice, put each word in a sentence and write them in alphabetical order. The last few weeks have been difficult as far as getting Jazzie to do her spelling homework. It is a struggle every day and more than once Jazzie has ended up in tears because of it. Last week she brought home her spelling words and the first words out of her mouth were: "Mom, I will not be able to do my spelling homework, because I don't understand what any of these words mean." I will admit that the words for that week were particularly difficult (like "hypothesis" and "classify"). However, I cannot imagine her teacher not going over these words with the class, but Jazzie obviously completely missed it.. Children with cochlear implants often need direct instructions in vocabulary. This is actually written in Jazzie's IEP. I didn't think that this was actually happening and I wasn't too worried about it until now. I will make sure that her teacher will take the time to take Jazzie aside and go over vocabulary with her. I will also start working more with her at home. In addition we will take Jazzie back to Ohio Valley Voices once a week for after school tutoring. The goal is to get her back to where she was before, which is above her hearing peers. I feel bad that she is going to have to work extra hard to keep up especially since she's been working hard her entire life, but we know she is capable of it with the correct intervention.

On top of the phone call from Ohio Valley Voices, I also got a phone call from the person who works with the hearing impaired children in our school district and who is responsible for the assisted listening devices that the schools use. Her reason for calling was because it is time for Jazzie to be tested by our own school district. However, I also discussed with her what has been happening with Jazzie and she agreed that we have to make sure that Jazzie is receiving all the services that she needs. The school is obligated by law to follow everything that is written in her IEP. I am not blaming the school for anything. They have been nothing but wonderful and have given us everything we have ever asked for and I am confident that they will continue to do so. We were all just so excited by the fact that Jazzie is doing great in school (and overall she really is doing amazingly well), that we forgot the fact that she is still a deaf child who is learning in a classroom designed for hearing kids. 

I am going to make sure that Jazzie has pictures to go with vocabulary since she is a visual learner. As a matter of fact, this was her ONLY way of learning before she could hear and even though she can hear now, she continues to be extremely visual and I doubt that will ever change. We sometimes forget that Jazzie is deaf (her teacher has even told me that multiple times) and I think we have all been overestimating what she can do. This is not to say that she is not amazing. She is. This was simply a big reminder that Jazzie will most likely always need to work harder than the other kids in her class.

I for one am determined to help her succeed because I know she can.

Memory Monday

I thought I'd try something new. Since I am struggling with what to blog about lately, I thought that on Mondays I will post some pictures from the past with some memories that go along with it.

These pictures were taken in 2004. Jazzie was about 17 months old and we were in the very early stages of her getting used to her new cochlear implant. At the time she wore her processor in a harness on her back instead of behind her ear. In a few short years, cochlear implant technology has come very far.

 

 
For the first year after Jazzie was implanted, we had about 4-5 appointments every week. We used to go to Children's Hospital for speech therapy, aural rehabilitation and follow-ups with the ENT. Besides that, we had Early Intervention come to our home for speech therapy and we had visits from the Regional Infant Hearing Program. It was a crazy time, but looking back it was one of the best times. This was before Jazzie started at OVV full-time so it became my mission to do whatever I could to help Jazzie. I not only spent a lot of time driving her to and from appointments, but I also spent a lot of time with her in this playroom. Whatever the therapists did with Jazzie, I continued at home. Whatever book or toy they were using to get Jazzie to make sounds or say words, I would buy. Everything I did with Jazzie revolved around her learning to listen and speak. It was all done through play, but it was work.

 

Our playroom turned into our private therapy room. I knew that what I was doing was important and I was happy doing it. I never could have invested the time that I did had it not been for the fact that I did not work so I had the time to do this and we did not have any other kids in the home. I was able to focus 100% on Jazzie. I spent hours and hours with her in this room going over flash cards to teach her vocabulary since she only knew the signs and not the spoken words, playing auditory games and practicing her Ling 6 sounds. It was time consuming, repetitive and it took a lot of commitment, but I enjoyed every minute of it. I never once thought that Jazzie would not be successful with her cochlear implant; I was too determined. We saw improvement in her every week and it was so satisfying. To see our girl go from not hearing and speaking to being the girl she is now has been amazing.

She was and continues to be our SUPERSTAR.

Timeline project

I was able to watch Jazzie present her timeline project to her class yesterday during my volunteer time. Jazzie chose to do a timeline on cochlear implants and I was so proud as I watched Jazzie stand in front of her friends with such confidence.

After presenting her timeline, she answered questions and I was amazed at how she was able to explain everything. And with pride at that!

I really enjoyed watching all the kids give their presentations. There were timelines ranging from the Cincinnati Bengals to fire engines to Jell-O to aviation and the Jonas Brothers. Now there is a relevant timeline ;-)

I was SO proud of my girl!!

 

Reaching out for my girl

Yesterday, while volunteering at school, I saw the school pshychologist and Jazzie's speech therapist together in a room, so I decided it was a perfect moment to talk to them about Jazzie's negative attitude about her hearing loss and cochlear implants. You might remember from this post that Jazzie has been making some pretty strong statements lately. So, I went in there and explained what has been going on with Jazzie and the speech therapist in particular was shocked about some of the things Jazzie has said. It seems that at least at school, Jazzie's attitude is nothing but positive. I have also talked to Jazzie's teacher about the situation and she has also never seen anything but positive things. I was worried at first that somebody might have said something to Jazzie about her implants or that Jazzie might have found herself in a situation where she couldn't participate because of them. However, that does not seem to be the case. I was disappointed after talking to the school psychologist and speech therapist, because I was hoping that they would give me some advice. I was definitely not expecting the school pshychologist to say: "Let me know if there is anything I can do". Hello?!?! Isn't SHE the expert? Maybe I should have been more specific in asking for help, but I thought it was obvious that I came to her for some help and guidance. I felt like I got nowhere there. Again, maybe I should have been more specific and I might talk to the them again, but this time asking for some specific strategies.

Ohio Valley Voices has been very helpful and just being there is a great thing for Jazzie. I am doing whatever I can to keep our connection to that school strong. Not only because the school has been so amazing for Jazzie, but because Jazzie seems to be so happy to be there and to see her friends from there. It really is helpful for her. Jazzie was invited last night to be part of the school's annual Holiday Program. This was the first year that they invited some of the alumni students to be a part of it. The alumni students were invited early so that they could socialize and have some pizza together before the show started. I think this is a wonderful thing for Jazzie. There was actually only one other student there that she knows; the other kids that were there last night left OVV right as Jazzie started. There was one student in particular that I would like to get to know better for Jazzie's sake. She is a 13 year old girl and I think she would be a great role model for Jazzie. This girl is into sports, does great at school, has lots of friends, dresses in cute clothes, etc.  I don't think Jazzie realized at first that she was deaf, until she took her processor off to change her batteries. Jazzie's face lit up and she came running over to me: "Mom, that girl has an implant just like me!" I think it would be wonderful if there could be some sort of relationship there. I know OVV is working on setting up som a mentoring program for alumni students and I am so excited that there is going to be a summer camp for them next year. I know Jazzie could really benefit from this. She is just so happy whenever she is with her friends from OVV. Here is a picture of Jazzie hanging out with one them, right before the program started:

One more thing; while waiting for everyone to arrive at school last night, Jazzie was standing next to an alumni student who is now in fourth grade. He was talking to everyone and just having a good old time. Jazzie wasn't saying much at the time because she didn't know anybody and she generally gets very quiet in those kind of situations. At one point the boy looks at Jazzie and asks her: "Don't you talk"? Jazzie just nodded "yes", but didn't say anything else. He got a little closer and asked her again: "Can't you talk? What, do you just speak Chinese or something"? This caused Jazzie to roll her eyes at him and say "NO!" On the one hand I thought the whole thing was funny, but on the other hand it gave me some glimpse of what it might be like when Jazzie gets older and kids her age might not be quite as accepting of her and start saying things that might be hurtful or unkind. I know it's coming and I just want my girl to be ready and confident enough to deal with it.

That is why I am reaching out now. To whoever I can.

Heartbreaking - part two

Wow, I got a lot of responses after I wrote my post named "heartbreaking". Not only here on the blog, but on Facebook as well. I want to once again all my friends who called, e-mailed or texted me that day. I was quite upset then, didn't really know what to make of all of Jazzie's statements and wasn't really sure how to handle it. Your words of encouragement and support meant a lot to me.

Since then I have had time to think about it some more, I have talked to some other parents of children with cochlear implants and to someone at Jazzie's old school. And even though I still have some concerns, I do feel better. When I talked M. at Jazzie's old school, I was told that she has gotten a lot of phone calls over the years from parents with similar stories. It seems to be pretty typical that children like Jazzie feel the way she does. The interesting part is that M. told me that these kind of issues almost always surface in second grade. Normally you wouldn't see self-esteem/self-worth issues until 5th or 6th grade, but for some reason they appear earlier in kids like Jazzie. Not sure why.

M. and I discussed some ideas as how to help Jazzie through this. And even though Jazzie made some strong statements, I do believe that part of it is just normal, age appropriate behavior. The happy behavior FAR outweighs the issues stemming for being deaf and I do not think I need to go as far as saying that Jazzie's statements were a cry for help, as one commenter stated. I do agree with the same commenter however, that being deaf is not the same as having red hair, as another person commented. Of course we all wish that we could change something about ourselves that we don't like, but you cannot compare having to deal with red hair, or being tall (which I hate myself), etc. with being deaf and having cochlear implants. Jazzie has had to overcome SO much and while yes, she is amazing, she is only 7 years old and that is a lot to deal with.

For now I'll keep doing what I have been doing. I will never judge Jazzie's emotions or put her down for feeling sad or angry about being deaf. I will continue to get her together with other kids who are like her. I will continue working with Ohio Valley Voices for as long as they offer services for her. I will continue to be pro-active and not let any comments and/or behaviors slide. I will continue talking to other parents who have been there. And I will continue loving Jazzie and thinking she is the most amazing girl; just like I always have.

A commenter said: "loving someone a lot does not make problems go away". True, but loving someone does give them the confidence to share their emotions. Growing up, I didn't feel like I could talk to my parents about anything. I'll be damned if I have my daughters grow up the same way.

Thanks again to everyone for all your comments. I appreciate them ALL and they gave me a lot to think about.

Heartbreaking

Jazzie has been talking a lot about the fact that she wishes she wasn't deaf. As she was snuggling with me in bed this morning, she mentioned it again. Here are some of the things she said:

"Being deaf is the worst thing in my life".

"Being deaf is boring".

"Being deaf is such bad luck".

And the one that got me the most:

"I wish I could die and then be born again without being deaf".

I am struggling with finding the right words to respond to these kind of statements. I want her to know that I understand how she feels and that it is okay for her to feel that way. But I also want her to know that I love her exactly the way she is and that I think we are lucky and FAR from boring ;-)

How can I as her mother help her through this? I am struggling...

Imagine

I LOVE the show Glee. It is definitely one of my all time favorite shows. Here is a link to a clip of one of Glee's finest moments.

http://www.youtube.com/watch?v=rxG1eGlOhMg

Please watch it if you have not seen it. As the mother of a deaf child, this scene touched me deeply and brought me to tears. It spoke to me because I love the song. It spoke to me because I think sign language is a beautiful language. It spoke to me because in this episode you can see that people don't have to be able to hear music; music is in people's heart.

It spoke to me because of Jazzie. My beautiful Jazzie who can hear with her cochlear implants, but who cannot without them. My girl who has been signing since she was 10 months old, but who also has a voice.

I think sign language is beautiful. I think my daughter's voice is beautiful. She has been blessed with both.

We are so lucky...

Shirts and magnets

Now that fall weather is here, I am so excited to finally put the short sleeves shirts away and get out the cute long sleeve shirts I've been waiting to put on the girls. Here is one of my favorites:

Every now and then Jazzie will discover something new that her cochlear implant processor will stick to. She has hung her processor on the fridge, the car and on a dry erase board. She recently started seeing what will actually stick to her head. Her latest discovery: a magnetic clip...

 

ENT visit update

We saw Jazzie's ENT about the lump behind her ear and he was baffled. He wasn't quite sure what to make of it. He did say it was not infected, he wasn't able to move the implant around with his finger (that is good) and he was able to touch it without hurting Jazzie. The lump is not bothering her at all. The doctor said that sometimes as the kids grow, growth hormones may cause the scar tissue to grow and become thicker, but that usually doesn't happen until the teen years, so he was confused as to why this seems to be happening to Jazzie now.

Jazzie's ENT wants to see her back in two weeks.If the lump continues to get bigger, if the area becomes red or if Jazzie starts complaining of pain, we will have to go back sooner. At our next appointment he will most likely have Jazzie get a CAT scan to make sure that nothing is happening with her equipment becoming dislodged. So even though the doctor wasn't really able to give us any answers, he was happy we came by so that he could see it and he was less concerned after having seen it than he was before. Of course the fact that there is a lump that wasn't there before worries me and until that lump is gone or until we get that CAT scan to make sure nothing serious is happening, I won't breathe quite as easily...

Jazzie's medical issues continue (updated)

Sigh... the scar behind Jazzie's left ear is not looking right to me. We noticed on Friday that it looked a little red and a bit swollen. Jazzie was not complaining about it all, I just happened to notice it as I was putting her cochlear implant processors on. I called the ENT and we were told to let the area rest for the weekend and to give it a few more days. After the weekend I thought it looked better so I let it go, but this morning I notice that she has a pretty big lump at the top of her scar that wasn't there before. I am calling the ENT again this morning. This is the side that was just implanted last year and that has given us several problems :-(
The good thing is that Jazzie is not complaining about it hurting at all.

In a couple of weeks I have to take Jazzie to an orthodontist for an initial evaluation. We have had several issues with her teeth (extra baby teeth that needed to be extracted and crowding among other things). We have already been told that she is going to need braces, but her dentist wanted us to see an orthodontist to see if there is anything that he wants to do now or if we can wait a little long. In the words of her dentist: "It doesn't need a person with a dental degree to see that Jazzie's teeth are a problem". Poor kid - she has trouble with her ears, her eyes, severe environmental allergies and her teeth.

The good news is that her eyes are doing so much better. Wearing the patch and her glasses have been great and her eyes have improved tremendously.

 

Through it all Jazzie has remained happy, funny and smart. That's my girl!

**UPDATE** Called the ENT and he wants to see her this afternoon at 1:30.

Warranty - it's a good thing

Several weeks ago Matt and I had to make the decision whether or not we wanted to renew the warranty on Jazzie's first cochlear implant. We debated back and forth about what to do, since renewing the warranty did not come cheap. We are talking $800. We have been very lucky in that we have not had a lot of problems with any of the equipment. On top of that, Jazzie is very responsible and takes good care of her cochlear implants. $800 is a lot of money and we thought about just winging it. We do have one back up device, but Jazzie now wears two. We also thought about the fact that she is getting older, she is more independent, she does more extracurricular activities and we are not around as much to help her should a problem arise or to make sure that her implants are safe. In the end, we agreed it was too risky to just hope for the best and we decided to renew.

We just got all the paperwork finished last week and wouldn't you know that last night while changing her batteries, Jazzie accidentally dropped one of her processors and cracked it!!! Below is part of the price list of the part that needs to be replaced. I am so glad we decided to go ahead and pay the $800...

® Freedom™

Controllers

Freedom BTE Controllers

Part No. Description Price

Nucleus

S50610 Freedom BTE Controller, 3 Zinc Air - beige $1,500.00

Good thing we decided not to "just wing it"!

Waiting on the (deaf) world to change

Part of an e-mail I received this morning:

"You should be ashamed of yourself for not allowing your daughter to be who she is and for not allowing her to be part of the deaf community".

It's been a while since I have had any negative comments about our decision to give Jazzie a cochlear implant. I am not going to get into a long explanation as to why we did it. I think everyone that knows Jazzie understands why we did what we did and that she is a perfect example of how a deaf person can be part of the hearing world and function just fine in it. I stand behind our decision 110% and I am definitely not ashamed.

Another part of the e-mail: "I think it's sad you are denying your daughter the gift of her culture". I think it's sad there are still people who deny their children or themselves the gift of hearing... It's funny, because I used to get angry and offended by comments like this, but now I just feel sorry for people who don't understand or refuse to see how wonderful cochlear implants are.

The person that sent the e-mail referenced the following video. I have seen this before and I posted it here a while ago. I actually really like the video. I think it has a good message (even though it shows negativity towards cochlear implants). The message I get from the video is that deaf people can do anything hearing people can do. And now with cochlear implants they can hear as well.

This video is depicting members of the deaf community who are waiting on the world to change their idea of them and what they are able to accomplish. I am waiting on the (deaf) world to change their idea on cochlear implants and what they are able to accomplish...

"It's not fair that I'm deaf"

This is what Jazzie has been saying a lot lately. She is suddenly very aware that she is different than most people. She is very aware now that she is the only deaf child in our neighborhood, the only deaf child at school, the only deaf person in our family, etc.

Her biggest issue this summer was that she wanted to be able to hear in the pool and just this past week she mentioned several times that she wishes she could hear in the shower or the bath tub.

"Why am I deaf and not Tahlia"? It's hard to answer. I just keep reassuring her of how special she is, how cool it is that she has cochlear implants and how proud I am of all her accomplishments despite the fact that she is deaf.

Just the other day she said: "It's not fair that I am deaf AND I have to wear glasses"... I decided to tell her then that her dentist has already told me that she is going to need braces when she gets a little older. I am hoping that if she is prepared for it, it might not seem so unfair to her.

Wishful thinking, right?

Thursday

Here I am sitting with a cup of coffee on the second day of school. I just put the girls on the bus and I am getting ready to hit the grocery store. Like I expected, Jazzie also had a great first day of school. I went into her classroom in the morning to talk to the kids about her cochlear implants. I did this last year and it gave me an opportunity to explain to the kids what Jazzie has on her head and behind her ear, why she is wearing it and that she may still have trouble hearing if it is noisy. Jazzie asked me to come again this year, but unlike last year Jazzie did most of the talking this time. I was so proud of her. She stood in front of the class and explained herself why she wears her cochlear implants and how they work. She pulled her hair back so that everyone could see her processors and took the magnets of her head and put them back on to show the kids how they stick to her head. She has come so far...

Here is Jazzie coming home:

 

 

Aaah... we are back into the school routine and I am liking it.

Getting ready in the morning

Jazzie has been very good about being responsible for her cochlear implant processors. At night she takes them off, puts the batteries in the charger and puts her processors in the special drying/cleaning box. In the morning she has been very good about prepping them and getting them ready for wearing. After putting the batteries in, she puts on a small piece of special adhesive tape to keep the processors on better:

 

I don't know what we would do without our trusty tape. Obviously, it is good for more than just toupees ;-)  

Deep concentration: 

 

After the tape is on, it's time to place them behind her ears: 

 

Making sure they are put on just perfectly: 

 

 

Now all she needs are her glasses:

 

And tada! My Miss Independent is ready to start her day ;-)

Love this!

I like this one as well. It is amazing how different American Sign Language is from the sign language they are using in the video below, but sign language (no matter what kind) is beautiful to watch...

Frustration/fear/humor

Behold the object of my frustration, humor and fear.

This is the smoke detector for the deaf that our local fire department installed for us at no charge. In case of a fire, the white round plastic thing (which is placed under Jazzie's pillow) vibrates like crazy and the light flashes around the room (almost like lightning or a strobe light) in order to wake her up. Not only can this unit be connected to a smoke detector, but to a phone and the doorbell as well.

It's a great thing, but lately we have been having some issues with it. Yesterday (for the second time this month), it went off in the middle of the night for no reason. I woke up around 2:30 AM because of it. I am not sure if it was the light that woke me up or if it was the vibration (which I could hear all the way across the hall in our bedroom). So I walk into Jazzie's room who is still sound asleep! I can see her body shaking because the thing is vibrating and the very bright light is flashing around her room and she is sleeping through it all.

I couldn't help but laugh at the fact that Jazzie is shaking in her bed and not waking up. However, I am also frustrated that this smoke detector is not working correctly and I am scared because Jazzie is not being woken up by it like she is supposed to. Right now it's fine, because Matt and I are here, but what happens when she is older and we are not around? What happens if there is a fire and she doesn't know it?

Even though Jazzie is leading a perfectly normal life as a deaf person with a cochlear implant in a hearing world, situations like these remind me that she will always face challenges and it worries and scares me...

Jazzie's speech

I often get asked how Jazzie's speech is with her cochlear implant. We think she sounds great. Jazzie has done amazingly well and we couldn't be happier with her progress. The greatest compliment people can give is when they tell us that they can't even tell that Jazzie is deaf. We agree, you can't. For those of you interested how Jazzie sounds, there is a clip of her talking here. 

Make sure you listen to the end where Jazzie's sense of humor comes through when she is talking about her aunts and uncles :-)

A pool drama

Yesterday afternoon the girls had an argument about whether we should go to the neighborhood pool or not. Tahlia wanted to go, Jazzie didn't. I know, what kid does NOT want to go to the pool, right? At one point Jazzie tells me: "Okay, I'll go to the pool if you play one game of Uno with me". Great, problem solved. We play the game and as soon as we were done, Jazzie tells me she changed her mind and does not want to go to the pool after all. I asked her if she lied to me when she said she would go to the pool just so that I would play a game with her. Her answer was yes...

When Jazzie was in first grade, she wrote this book called "Words of Wisdom". In it are sayings like "Treat others the way you want to be treated", "Learn to listen and listen to learn", etc. Also included in her book are "Always keep a promise", "Never tell a lie" and "Always keep your end of a deal you make". I explained to Jazzie that she not only lied to me, she also did not keep her promise, and she did not keep her end of the deal she made. I told her I was disappointed and that she had to go to the pool with Tahlia and myself because that was the promise she made after all.

So I made Jazzie change into her bathing suit, I slather sunscreen on her and we make our way to the pool. The entire time she is crying and telling me she does not want to go and that she is not going to go in the pool. When we get there, we find a seat and get all situated. Tahlia and I get in the pool and Jazzie is sitting on a chair with her arms crossed, still crying. Then she starts screaming that she hates the pool and that she wants to go home. I get out of the pool and tell her that she needs to stop screaming or she will be grounded. I get back into the pool and every time I look over at Jazzie, she is signing that she hates the pool. Smart little thing; at least she's not screaming :-)

At this point I am wondering if she does not like the pool because of her cochlear implants. It is true that Tahlia would MUCH rather go to the pool than Jazzie. And the last few times that we have been at the pool, I observed Jazzie watching her friends play in the water while she is off on her own. She cannot hear anything in the pool because her implants are off and I wonder if she is feeling isolated.

After a while Jazzie comes over and tells me she is getting hot. I asked her if she wants to come in the pool with me and she finally agrees. She gets in and just like that her mood is over. She is giggling, laughing and having fun. Remember that a mere 15 minutes earlier she told me "hates the pool", but now she is telling me that the "pool is so joyful". We ended up having a very fun time at the pool despite of all the drama that went on before.

Aaah, the drama. Don't you just love it?

Yeah, I'm proud...

It is hard to believe that we only have 3more school days left and then my Jazz ie will be a second grader. I still cannot believe at times how far she has come.

Just a year ago I was blogging about how nervous I was about Jazz ie transitioning into our own school district. She had been safe and protected at Ohio Valley Voices since she was 2 years old and I was not sure how she would fit in with her hearing peers at a regular school. I was so scared and so sad to leave such a wonderful part of our lives behind.

And now we are a year later and Jazzie has done so much better than we could have ever hoped for. Not only was she able to keep up with her hearing peers, she is outscoring them in many different area's.

The beginning of the school year was not easy. It was difficult for Jazzie to get used to the new school and to a completely different school routine. As if that wasn't enough, she had to deal with her dental surgery and her second cochlear implant surgery. But like the true superstar that Jazzie is, she came back out on top. I am SO tremendously proud of her and everything she has accomplished. Not just in years past, but especially this year.

She has made new friends, the kids and teachers really like her, she has worked hard, achieved near perfect scores in all area's and loves school, just like she did before. She once again proved that my fears were not necessary because she is amazing and can overcome anything that is thrown her way.

I am proud of her beyond belief.

Challenges

I mentioned The Amazing Race in my post from yesterday. I am really hoping Luke and Margie will win, because I feel an obvious connection with them. In the first episode Luke mentioned how he wanted to be a part of the race to show people that deaf people can do anything other people can do, except hear. I think so far he is proving that to be true.

However, I can't help but think how lucky we are that Jazzie was able to get her cochlear implants. All our lives would be so different if she hadn't. I remember the episode where Luke is riding a rickshaw with his mother in the back and she is trying to tell him to stop. He couldn't hear her and she wasn't able to reach him to tap him on the shoulder and I thought about how great it is that I can just call Jazzie's name to get her attention.

Or how about when the teams are talking to each other and Luke has no idea what they are saying. His mom does interpret for him, but there is still so much information that he is missing.

Margie has to do all the talking because the fact is that most people do not use sign language so Luke is at the mercy of someone else to figure things out. Those cheerleaders need to take a good look at Luke and his attitude because NOBODY speaks his language and he is handling himself in a much nicer way.

I recently received an e-mail from someone who disagreed with our decision to implant Jazzie. This person accused me of not understanding deaf people because I have never even met any deaf persons. I am not sure where that statement came from, because I have met deaf people and I think that for the most part, I do understand them and where they are coming from. I am not going to get into another long explanation on why we chose a cochlear implant for Jazzie. It has done amazing things for her and for our family and when I see certain challenges that Luke is facing on the Amazing Race, I am so thankful that Jazzie does not need to face them. There are plenty of challenges for her already.

Books, Girlscouts and Cochlear Implants

Jazzie has been reading devouring Junie B. Jones books lately. She is in panic mode today because she only has two books left and she needs to go to the library to get more ;-)

Funny tidbit: Tahlia has trouble saying Junie B. Jones and has been calling the books Junkie B. Jones.

Too cute...

Jazzie recently joined the Girl Scouts. We were supposed to have joined a while ago and I was going to be the leader, but all that changed (long story).

Anyway, last night she learned about being helpful and friendly. The girls traced each other and then helped each other color the pictures.

Last night was also the official "pin ceremony" where the girls all get their girl scouts pin and their certificate to show that they are now official Girl Scouts of Western Ohio. The pins were put on up-side-down but will be turned right side up after the girls perform a good deed. Jazzie has been asking me already what constitutes as a good deed, so she is obviously thinking about it :-)

 

Getting her pin: 

\

Showing off her certificate:

 

And last but not least, look what I saw in this month's issue of Parents Magazine:

 

but we already knew that, of course... 

Wouldn't want it any other way

A few posts ago, I wrote how Jazzie had mentioned that she wishes she wasn't deaf. Even though I wish that Jazzie wouldn't have to face certain challenges, I cannot even imagine her not being deaf. Jazzie's hearing impairment makes her who she is. She would not be Jazzie without it. It is hard to imagine how different Jazzie would be had she been a hearing child. She may not have been so quiet and private. She may not have been as focused and observant. It's hard to say what part of her character is the way it is because she is deaf.

I can say however that my life would not be the same if Jazzie had not been deaf. I have learned so much about things I otherwise never would have bothered to learn anything about: how the ear works, cochlear implants and deaf culture. I never would have met some of the amazing doctors, therapists and teachers whom I have come to love. I never would have found some amazing friendships in other moms of children who are deaf and have a cochlear implants. The bond we share is very special and means a lot to me. They're the only ones who truly understand what it is like to have a child with hearing loss and a cochlear implant. Some of them I have known since we first came home with Jazzie. They have celebrated Jazzie's success right along with me and they have been there when I was scared and/or worried when things weren't going so smoothly.

I don't think I would have ever felt so driven to give back to a school that has done so much for Jazzie. I was extremely involved when Jazzie was at Ohio Valley Voices and I continue to be involved where I can. Not because I have to, but because I want to. Some of the things I was involved in forced me to step out of my comfort zone quite a bit, but I was willing to do it, all because of Jazzie and the school.

Having a deaf child has taught me to have more compassion, understanding and a stronger will to fight for what is right and fair. I have always been quite shy and reserved and it has been difficult for me to speak up for what I believe in. The need to advocate for Jazzie since she is too young to do it herself, has changed that. Hopefully that will also help with me teaching her to be her own advocate.

Having Jazzie has changed my life and her hearing impairment has enriched it in a way I never would have imagined. I wouldn't want it any other way...

Sigh...

"I wish I wasn't deaf and I wish you didn't give me a second implant"...

These words were spoken by Jazzie the other day and they were hard to swallow. This whole second cochlear implant thing has been so different from the first time around and it has not been easy for my girl.

We are still having some minor trouble with her incision. It is still pretty red and there is still a stitch sticking out that hasn't dissolved yet. Her ENT offered to take it out when we saw him on Monday, but Jazzie didn't want to have anything to do with that. She wants nobody messing with that ear, not even her ENT whom she loves. On top of that I got a phone call from Jazzie's old school yesterday (they come to her current school and work with Jazzie once a week) to let me know that she is not hearing correctly with her new implant at all. Even though it is still considered to be early after surgery to expect much of anything as far as her hearing is concerned, she was hearing certain sounds before that she is not hearing now.

So I made an appointment with the audiologist for Jazzie to be re-mapped this afternoon. A map is like a computer program that makes her hear sounds. I will have to take her out of school again for this, right after I had to take her out of school early on Monday to see her ENT about that stitch.

I know that things will get better in time and that it is still early, but all this trouble my girl has had to endure and her saying that she wishes I hadn't given her a second implant, almost makes me wish I hadn't. Almost...

Reading

Can I just say how proud I am of my girl? Jazzie has always loved books (even when she was a baby) and that love has grown over the years. Now that she is in first grade, she is in an accelerated reading class and is reading chapter books.

I just want to share this video of Jazzie reading and show people how well Jazzie has done with her cochlear implant. Most deaf people don't read above a 3rd or 4th grade level, but because of her cochlear implant and a lot of hard work, she is doing not just fine; she is doing excellent. I just want to shout it from the roof tops...

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And here is just a little clip of Jazzie reading when Alex was around last night. It is such a "big brother-little sister" thing ;-) I thought it was so funny when Jazzie told Alex to "stop so he wouldn't ruin it" when he corrected her.

And yes, that is bright pink lip stick she is wearing!

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