Loving the Nucleus 5 Processors

Another week has gone by. We have pretty much gotten the Nucleus 5 processors figured out. The difference between the new and the old (Nucleus Freedom) has been amazing! Taylor has really started trying to say words. This week alone, she has tried to say Waffle, Ball, Baby, Moo (as in a cow), and she is a PRO at saying Mama. :)

Once we got the new processors on her, with the appropriate settings and volume, she has loved them. She tries to put them back on herself. She has made an immediate and drastic improvement in her attempts to babble and to speak actual words.

The decorative covers are really cute too. We have the lavendar swirl ones and some pink camo covers.

We talked to our insurance company again this week, and they said they will be covering the surgery. I'm still waiting to see the EOB for confirmation.

Stay tuned for pictures and video.

Happy Times - Taylor is 18 months!

Taylor turned 18 months last Friday. It has been 6 months this week since we found out that Taylor is deaf. At her therapy session last Friday, Taylor was tested to see how well she is progressing. It had been 12 weeks since her activation. In terms of word recognition and cognition, Taylor now has the word recognition of ....... (drumroll, please............) an average 18-month old!!!!! She has in 12 weeks caught up to that of an average child her age. WE ARE THRILLED! This isn't the case for her verbal skills -- she is babbling more like a baby, maybe 10-12 months. She says Mmmm, Mama, Hi, and other than that, she makes sounds like wa wa, Oh, etc. Still no consistent dada or baba. She really likes music and is a great little dancer as she hums along with the music. Yesterday, we received a couple of very interesting items in the mail. Nucleus 5 Processors!! Amazingly small, with a great iPod-like remote to control volumes and programming, love it. It supposedly came with Taylor's maps on it, but she didn't like them and kept taking them off. Next Thursday, we have a mapping appointment, so I will let the audiologist get them mapped and wait until then for Taylor to wear them. Copies of Letters between our insurance and Blue Cross/Blue Shield in which BC/BS is denying payment of her surgery because it "wasn't deemed medically necessary." This is ludicrous considering that they approved the bilateral CI surgery back in July. Any advice??? At the end of the day, when I look back at the past 6 months, I am so happy and thankful that Taylor is doing so well. If I have to pay $100k for her to have unlimited opportunity, then I guess I will, but not without one heck of a fight with BC/BS.

Proof is in the Pointing

Taylor is now pointing at words in her books if we ask her to. This is the best evidence ever! And particularly handy since she is only 17 months old and most kids wouldn't point out things at 17 months. So far, she has pointed to airplane, flower, fish, and bottle when asked. I'm sure she knows more words... It's a limited attention span that gets us. :) We are thrilled to have this evidence of her learning and progress. Taylor is also babbling a lot more these days. She will try to "sing" along with music. She really loves The Little Einsteins and singing with their characters. "Aaaahhhhhhhhh!" as they are trying to make the airplane fly higher and higher. If she hears anyone laugh, she looks to see where it is coming from and usually joins in with laughter of her own! I can tell that she LOVES being able to hear with us! We can't wait to get the Nucleus 5, the upgraded version of the sound processor. Thanks for your notes and comments.

Learning Language

For Halloween, Taylor was a little leopard, and Derek was a Chicago Bears football player. They were both so cute. The weather was great! It was a good night.

Taylor has really been progressing. I don't know where November has gone. We are already planning Thanksgiving, and this is my first post of the month.

For the first month or so post-activation, Taylor made lots of meaningless sound. She was always a pretty noisy kid (so much for the stereotype that deaf kids are mute), and once she had the CI's, she was constantly making noise, especially if she was upset or bored. I would try to start singing or make some interesting sound to get her attention back to "listening." Starting about 2 weeks ago, or 6 -7 weeks post-activation, that noise-making really dropped off. She is really quiet most of the time, unless we take her Ears off... then she is back to chattering, but she doesn't realize it. She is still saying Mama, and MMMmmm (as in food is GOOD), and she will still say Mama even without her Ears on if she wants me.

Overall, although the list of words that we think she knows continues to grow, I am feeling frustrated at how to teach her that she has own voice. She has "Mama" down; she does do some high-pitched squealing; if we're singing, she will try to hum along. We (mom and dad) would like to see more babbling or exploring her voice. Trying to put myself in her shoes, I can see that she is concentrating so hard on figuring out all of the sounds and the meaning of the words that we are saying. From that perspective, I am thrilled. She is trying to hard to absorb, absorb. She will sit through 10 books or more! (at 17 months) Her attention span is impressive (at least to me.)

I'll close with a description of our last therapy appointment:

We were playing with our AV therapist. The whole family came to the appointment - Mom, Dad, Derek and Taylor. We were taking turns playing with some toys, and got to a drum. It was Taylor's turn to play the drum, and she was banging away. The therapist said "Stop," and Taylor just stopped and held the drumsticks in the air. We were shocked! So, we decided to test it again. She was playing away, the therapist said "stop," and she stopped right away. Same thing, drumsticks in the air, she just froze. The third time we tried it, Dad said "stop," and again she stopped. We did it again just to make sure she really knew "Stop", and does she ever!

I'm fairly sure that she has heard me say "stop" about 200 times in the two months that she's had Ears. After all, she has a two-year old brother.

Dancing!! and other humorous moments...

Taylor has started dancing. She likes her musical Halloween cards in particular. Derek & Taylor got two musicals cards for Halloween -- Alvin & The Chipmunks and Scooby Doo. Soo cute! I am trying so hard to get this on video. Standby for the video addition.

One of the first things that we did in therapy was a "Shhhh, Wake up" game. It's a good way to know if she is hearing the "Shhh", plus it's just plain old fun. She tries to play it by herself now... and if we just whisper "SShhh", she'll turn her head to the side and close her eyes like she fell asleep.

She also has started high-pitched squealing and imitation of lots of ranges of sounds. If I sing, she'll try to go along with me... not the words so much, more the tune.

We play an airplane game where we go "ahhhhh" and move our hand up and down like an airplane. Jon just made the "ahh" sound, and she started moving her hand like the airplane. We were in the family with room with toys and books strewn across the carpet. Taylor was sitting on my lap. I asked her to go get me a book to read, and she got down, picked up a book, and came back to me. :) This week at our therapy appointment, we said "Bababa" into a little bucket, and got her to imitate us. Next, we tried "Shhh" and she again imitated us and tried to say "Shhh." We have had some success getting her to do this at home. It's odd... we are trying to teach her the power of her own voice. There are lots of fun things happening... too many to write, but we are seeing progress!

Hoorah for Headbands

A frequent conversation among parents of little ones with cochlear implants -- How are you keeping them on your little roly-poly, wrestling, climbing toddler?

I originally started out with some Goodie elastic women's headbands. They were working great, but you needed two, one to hold each CI. And they were elastic, so sometimes Taylor would pull on them and end up snapping herself in the face, like a rubberband. Not good.

We go to a parent's group of deaf/hard of hearing kids in Wichita. There, I met another mom of a little girl with bilateral CI's. Her grandma had sewn her a headband with loops to hold the CI processor on. It works so well and looks great! The super sewing grandma hooked me up and offered to make some for Taylor. So far, we have light pink and dark pink, with others on the way. Mom, Dad, and the babysitters are thrilled! These pictures were taken while I was making some pies and whipped cream (on Taylor's mouth) last weekend.

(If you want a headband for your child, I can give you her contact information.) I love it so much, even if I had a boy, he'd be wearing it as a sweatband... maybe with a fake Nike swoosh or some kind of sporty decoration. It makes life with CI's and a 1-year old that much easier.

Taylor Talks!!

Taylor had her cochlear implants activated 4 weeks ago... On Wednesday, we thought we heard her say a word but weren't for sure. On Thursday, the same word came out - Mama!!!

Ha! A victory for Moms Everywhere! We all know that babies usually say Dada first. Not Taylor. She had a wonderful, amazing gift for her Mommy. Daddy was trying to take her away from me and she said "Mama"!

I will remember that moment for the rest of my life. The fact that my profoundly deaf daughter is learning to talk is a blessing so magnificent that I can barely comprehend it, certainly more than I dared to hope... all that we have done since the day we found out that she was deaf, June 8, was working toward this moment. And although we believed in the technology of the cochlear implant and the therapy that we have been working on, and even having met other children that have only had the implants for a few months or years, still I was prepared for nothing and afraid to hope for all...

In the booth testing prior to the mapping, Taylor easily heard a sound at 20 dB and a frequency of 1000 Hz. Above you can see that the normal range of hearing is 20 dB or below. Taylor is already hearing at normal levels!!

This week we went back for another mapping of the devices. "Mapping" is a programming process to fine-tune the CI for Taylor. She was a very patient little 16-month old, sitting for over an hour. She was playing with some toys, and they were trying to condition her to look at the puppy dogs or bears when she heard a sound. Instead, she just started repeating the sound back when she heard it. "Beep, Beep. Beep, beep." 22 electrodes on each side... The audiologist and therapist were laughing at Taylor's creativeness. It also made Jon and I wonder how often she was imitating us when we thought she was just making "noise."

Taylor is showing us her growth in receptive language. Today I asked her to pick up the diaper, and she picked it up. She also knows the word "shoes." (That's my girl!) We have been working with her on family pictures and names. She knows Daddy, Derek (brother), and Katie (our babysitter.) -- probably many others but this is just a start.

So Many Exciting Changes

This has been an amazing week. I always try to be extremely cautious about what I claim that Taylor does when writing the blog. There was such a long time period of her life that I thought she could hear, so I don't always trust myself to be an unbiased critic.

BUT.....

According to Grandma M, Taylor recognized my voice on the phone! Her Dad had her in Ok City for her therapy appointment, and she was crying her little eyes out. I called his cell phone and he held it up to her ear so I could talk to her. She stopped crying and started smiling!! Ahhh.

According to both of our wonderful nannies, Taylor has started doing some great new things this week. She will move her mouth like she is talking, but doesn't make any sound. (I really want to get this on video.) She rubbed her tummy and said "MMmmm," imitating Derek and the babysitter, during snack time. She also tried to imitiate some other word-like sounds, even once sounding like she said "Uh-huh" for a sucker. Another time, Katie said "Let's go upstairs" and Taylor started heading for the stairs.

According to her Dad, he is noticing big changes this week too. They were playing and wrestling, and she started imitating sounds he was making. :)

These are all very little, but very BIG, things. It is so important that she start to understand the meaning of words, and recognize that she has her own little voice in there.

Taylor seems to think all bodily functions are hilarious right now.

Burps will turn her head at any moment. She even did a fake burp tonight.

Coughing - she will imitate us or even purposefully cough to try to get us to cough back.

Spitting (or sound of spitting)

Gargling, thanks to Derek... her brother, sidekick and partner in crime.

It makes sense that Taylor will go through a learning process for sound similar to a newborn baby. At 3 weeks post-activation, I would say she is about like a 6-8 month old baby. She is going through the same learning progression, at a more rapid pace.

I continue to be amazed by Taylor's ability to adapt to the new world of sound, and I am so thankful that cochlear implants exist.

Taylor's Top Ten List and TODDLERS!

Well, it is impossible to write this without wanting to share a couple of recent happenings with Derek, Taylor's 2 1/2 year old brother.
The other night, after Derek's bath, I was sitting on the floor putting his lotion on, with the pajamas ready to go. He was standing up, so I asked him to go grab a diaper for me... Derek's response, "Why, Mommy? Are your arms broken?" Hmmm, I'm picturing a big smart aleck during the teen years.
Another recent adventure - We have to drive 3 1/2 hours to Oklahoma City for Taylor's therapy appointments. Derek is potty-training and Taylor still wears diapers. Two hours into the drive, Derek has to go potty. I swing the car into the first place I see - Sonic. With a Bathroom. Whew! I have to take them both in the bathroom, and change Taylor's diaper as well, but of course there is no changing table. And did I mention that Taylor is fascinated with the toilet right now? Well, Derek is on the toilet going potty, and I had Taylor standing up as I tried to change her diaper... I look up to see her putting toilet paper in the toilet, her hand going right into the stream of potty... then I try to pick her up and away, only to have her put her arm around me getting some of the potty on my face. Oh yeah, these are the moments that Motherhood is made of. And finally, as Taylor's Mom, I'm taking the liberty of mind-reading and creating a Top Ten List for her, since she can't quite tell us yet. Here goes:
Top Ten Things that Taylor thinks are Really COOL since Activation:
10. Water running from faucet
9. Wind chimes (we always have wind in Kansas!)
8. Wind, especially blowing through the trees (yes, there are some trees in Kansas.)
7. Lawnmowers
6. Taylor pretending to Sleep & Wake Up game, her own twist on an AV therapy game
5. Taylor slamming cabinet doors
4. Taylor throwing her cup to the floor
3. Our cat meowing
2. When anyone Sings Songs!
1. Getting to hear her family laugh - she always starts laughing too!

It's the Little Things

We had another mapping session on 9/16 where she got turned up a little with 2 new programs. She did great in the mapping session, definitely showing intelligence and tolerance to stimulation. She has been wearing her CIs without much fuss, besides in the morning when first putting them on. I liken it to the alarm clock in the morning. It always seems so loud when it comes on when you're used to silence all night. We slowly turn her up as the day goes on. Taylor has now been "turned on" to the world for 11 days. She has shown us some little reactions to sound that normally we would take for granted. But for me, these little reactions have meant everything. When Derek was born, he failed his newborn hearing test. Being the paranoid father, I would occasionally make a squeaking noise to check his reaction. He would always squint his eyes or blink to the sound. After Taylor failed her newborn hearing test, I would do the same thing but never got a reaction. This past week, I have made that noise a few times. Each time she blinks in response to the noise. She also does it when a door shuts or she drops her sippy cup on the floor (which she now thinks is hilarious and does it all the time). Seeing her blink in response to noise may not seem like a lot, but it's all I wanted her to do when she was younger and never did. We now are getting an opportunity to watch her learn noises like a newborn. It is an incredible feeling.

Another Dimension!!

Taylor had her cochlear implants activated on September 9 and 10, 2009. Age 15 months.

Day 1:

Impossible for all of us to imagine, but Taylor never knew sound existed until Wednesday, September 9, 2009. For this little 15-month old, who thought she had the world pretty well figured out, it was a mind-blowing experience. The best word that I can think of to describe her reaction was terrified, at first anyway... The video is only 2 minutes long but will give you an idea of what it was like. She cried a lot that first afternoon, but after about an hour or so, she calmed down and started playing as usual.

Day 2: We were warned that the most difficult part of transitioning to wearing a CI is putting it on each morning, to go from complete silence to the loud world of sound. I put the CI on her when she first woke up on Thursday morning, and she cried and fussed for about 30 minutes before settling into wearing it. She wasn't trying to take it off; I think she was freaked out by those "sounds" being there again... like maybe the day before was some weird dream.

I have been buying random headbands, hats and even a shirt (http://www.hearingpocket.com/) that I thought we might be able to use for keeping the CI's on her head. I bought a set of four women's Goody elastic headbands at my local grocery store, and they seem to be working well. The fact that she is leaving the CI's and headbands on really says it all. We can't even get her to hold still for a diaper change. Changing her clothes is like wrestling a greased pig. But with all that, she is keeping the headband on. All day long. It really only came off when she was playing or wrestling with Derek.

We could see the exhaustion on her face as the day wore on. By 11 a.m., she was napping and slept about 90 minutes. We had the activation for the right side on Thursday afternoon. During this activation, Taylor got a little upset when the device was being tested, but other than that, she was great. We went home with two little CI's on her head. :) She slept almost 2 hours in the car driving back to Kansas. Learning to listen is a lot of work.

Day 3 - First Day with Two Ears Again this morning Taylor went through a short time of being upset when we first got the CI's turned on. She left them alone, but wanted to be held and comforted by me for a while. She started showing signs of a lot of excitement today. The look on her face was like "I am in a whole new world and I like it!" She had a good nap, but was still getting mentally exhausted by early evening. Her brain is working so hard to figure it all out -- wind, crickets, lawnmowers, Derek saying "mine" and "No, Taylor", etc. He says "No, Taylor" so often that I am afraid she will think that is her name.

Days 4 and 5 Taylor is having fun with this. She looks up right away when I say her name or just speak in general. She has figured out that our cat meows and thinks it is hilarious. She knows that our dog's bark is really loud and thinks this too is so funny. I have enjoyed playing old games with her, now that she can appreciate the sound portion as well. We played Peek-a-boo, and she made me laugh by covering her face/eyes when I did and then uncovering them when I said Peek-a-boo. She was waiting to hear me, before she would move her hands. So cool. Our family has learned several signs in the past few months, and now I am using those in conjunction with speaking the world in the hopes that it will help her recognize words. It is going to be fun to see how she picks it all up. We are so thankful that cochlear implants exist.

BLING! We have been having fun decorating her "Ears." Today she had pink and purple headbands, with pink "ears". The right one was accesorized with a purple cover, to coordinate (serving a dual-purpose as we have to keep right and left sides separate.)

Just As You Are...

Does anyone remember in the movie "Bridget Jones' Diary" when Mark Darcy says to Bridget -- "I like you just as you are"? And all of Bridget's friends couldn't believe he'd said that, thinking it was so amazing. How often do any of feel like we are loved just as we are? I just felt like I needed to go on the record that Taylor is perfect as she is, regardless of what happens with the CI activation tomorrow and the years to come. She is one of the most joyful, loving, determined and outgoing children that I have ever known. There is much controversy about getting CI implants in deaf children before they have the ability to make the choice for themselves. I hope that by doing this, we are giving her the choice to hear or be deaf later in life. Otherwise, Taylor's decisions to talk, listen, and communicate verbally with all of us would never be an option for her, so profound is her loss. So, here's to opening doors.... Enjoy the video. She was tackling her cousin, 5 days after the CI surgery, with a little help from Derek.

We want Cochlear Implants, stat!

There is such a range of emotions that parents experience when finding out that their child is deaf. I won't expound in great detail on it, but I will say that I have relived every day and every memory that I had of Taylor back to her birth, how she reacted to certain situations and what I would have done differently had I known that she was deaf. But I am a person of action, and revisiting the past isn't going to get us anywhere. What to do? We had done research before the diagnosis, and knew cochlear implants would be our preference for Taylor if she was profoundly deaf. Let me give you an idea of what the summer was like: June 8 - ABR, diagnosis Profoundly Deaf; first appointment with otolaryngologist/CI surgeon June 10 - CT scan to rule out tumors and ensure the anatomy was normal and would allow CI June 12 - Second appointment with otolaryngologist; Speech therapist appointment June 15 - Pediatric cardiologist appointment to rule out any syndromic deafness with associated heart conditions. (None found) June 19 - Appointment with Audiologist. Taylor got her hearing aids. June 26 - Speech therapist appointment. No benefit shown with the aids. July 21 - First appointment with new otolaryngologist at Hough Ear Institute in OkC. Genetic testing sample taken. July 27 - Audiologist appointment. No benefit with aids. July 27 - Wichita Otolaryngologist appointment. Their Goal for her CI surgery, on one side - November. Taylor would be 17 months old. Not acceptable to us. July 28 - Genetic testing results, 2 recessive copies of Connexin 26 gene mutation. August 3 - First meeting at Hearts for Hearing, our audioverbal therapy center in OkC. August 10 - BILATERAL COCHLEAR IMPLANT surgery at the Hough Ear Institute!! Age 14 mo.

This glosses over so many important decisions that we had to make along the way: To sign or not to sign (We are!) ASL or SEE or Baby Sign? We selected SEE, Sign Exact English. Nucleus Freedom or Advanced Bionics - selected Cochlear's Nucleus Freedom. Implant on one side or both? BOTH! Simultaneous or Bilateral surgery? She had both implants done at the same time. What colors of implants? What types of processors? What causes deafness? How do we get genetic testing? Do we drive 7 hours roundtrip for audioverbal therapy for the next few years? And then there are all of the long-term decisions that we'll have to make -- will we have to move to a larger city with better access to schools and therapy? With a 25% chance of having another deaf child, should we have more children? And how do we get involved to make the process easier for the parents that come after us? CI Activation Date: September 9, 2009. Location: Hearts for Hearing, Oklahoma City

Our daughter is deaf?!?!

Taylor, Born June 4, 2008. 6 pounds, 11 oz. She was welcomed into this world by an older brother, Derek, age 17 months. Derek didn't pass his newborn hearing screening when he was born. At the follow-up exam when he was one-month old, he passed... whew, no more worries for the new parents. By the time Taylor was born, Derek was talking away. When Taylor didn't pass her newborn hearing screening, we weren't concerned. After all, the same thing had happened with Derek, 17 months earlier. No family history of deafness. Taylor proceeded to amaze us with how fast she progressed; she was very attentive early on, smiling early, laughing whole-heartedly at her brother by 3 months old... She has the most magical laugh. I hope it doesn't change once she can "hear" with the cochlear implants. Taylor was ahead of the milestones on physical development, across the board. She started walking at just over 10 months. She was also so very social and in tune with everyone in her environment. As her parents, we started to get concerned at around 8 months when we noticed that her babbling wasn't changing. She made raspberries noises, and would cough or smack her lips in imitation of us, but there weren't any word-like pronunciations such as mama, dada, baba, etc. We made an appointment to get her hearing re-tested by an audiologist at 11 months. She again did not pass the OAE exam. The audiologist suggested that we wait another two months and see if we could tell if she understood any words that we said, regardless of what Taylor was speaking to us. She just didn't think that Taylor acted like a deaf child. (More on that later...) At that point, my husband and I were very seriously concerned, and we realized that whether she had a hearing problem or not wasn't something that we were going to wait another two months on... 13 months! No way. We made an appointment with an ENT to analyze Taylor further. Her ears appeared to be in excellent condition. He again said the same thing as the audiologist had -- she didn't act like a deaf child. Hmmm. This is a child with no history of ear infections or fevers; she has never even had a cold. He referred us to a center in Wichita for further testing of her hearing. We called to immediately schedule an appointment, but it was almost a month for them to get us in. June 8, 2009 was the day. We had our ABR test. In babies, the most effective way to test their hearing is to conduct an Auditory Brainstem Response test. Basically, they put the child to sleep with anesthesia, emit sounds to the ears and test for brainwaves. Prior to the test, two audiologists observed Taylor and how she interacted with them, toys, stuffed animals, and cell phones. Again, one of the audiolgists commented to us that it appeared Taylor had heard something she said. Well, the results of the test were simple: No brain waves shown at any point, at any decibel level. She is profoundly deaf.