Wednesday, September 23, 2009

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!

Sunday, September 20, 2009

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.

Sunday, September 13, 2009

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.

video

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.)

Tuesday, September 8, 2009

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. video video

Tuesday, September 1, 2009

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