Taylor is a big sister and Lauren will get "ears" too!

Welcome to the World, Lauren!

2012-01-06T21:18:00.001-06:00

Well, hello all. It has been a long time since our last update. Pregnancy, working full-time, a new baby with a 3-year old and a 4-year old will do that to a person.

Lauren was born on August 9. She weighed 7 lb, 5 oz and was over 20 inches long. She looked like both her brother and her sister. We did the OAE a couple times in the hospital. She didn't pass. At 4 days old, I did a couple unscientific tests of my own, and determined that she was deaf as well. Taylor's genetic testing showed that we are recessive carriers of Connexin 26, so we knew there was a 25% chance. We had an ABR at 6 days old and confirmed profound deafness. She had a no response ABR, as Taylor did.

I want to say it was easier finding out the second time around, and it was. But it was still hard too. I think I cried for a few days this time (combining all this with the post-partum hormones didn't help), versus a few months with the diagnosis for Taylor. When we found out about Taylor's deafness, she was already one year old, so I was sad and guilt-ridden about all of the baby moments when she couldn't see me/family, but we thought she could hear us - rear-facing in the car seat, riding in the stroller, singing to her when she was in her crib, and so on. I was also worried and uncertain about what Taylor's future would be. Now, I know there are no limits whatsoever to Taylor's future for social, career, and recreational opportunties.

With Lauren, I cried about the times that she would miss hearing as a baby - the lullabies and laughter of her brother and sister and the I Love You's from Mom and Dad. Fortunately, we've been down this road before; we had a plan before she was even born; and we get reminded daily of the wonderful future ahead of Lauren, because we live it every day with her big sister. And I know those baby moments that she'll "miss", like lullabies, etc. -- she will never know for a second that she missed anything.

Lauren, December 2011

When we got home on the evening of Lauren's official diagnosis, I pulled out Taylor's baby book from birth to age 1, and looked at picture after picture of a happy, smiling baby. We didn't know she was deaf at that point, and Taylor certainly didn't think she was missing a thing! It made me feel so much better. Today, I am nothing but thankful for my healthy and beautiful children. I am grateful that we get to parent Lauren. I know that she will also be an amazingly example of deafness, and overcoming challenges in general... and through perserverance and hard work, anything is possible for these children. Of course, the right surgeon, mappings, and therapy all help. Getting them access to sound is the key, and the learning will happen.

We have had hearing aids for Lauren since around 3 weeks of age. I keep them on her as much as possible. She is almost 5 months old, so she is awake and up more all the time, making it easier and easier. I have seen her respond to sound a few times, so I know they are providing some access to sound. To what extent, I don't know. We know the end result with her diagnosis is bilateral cochlear implantation. We have met with the surgeon and are working on that timeline. In the meantime, if any access to sound can be provided through the hearing aids, we are going to do our best.

Taylor, Crazy Christmas Headband

Taylor is now 3 and a half. She has been in the local preschool since September. She loves it and is doing extremely well. Her vocabulary is impressive and she regularly says 7-word or longer sentences. She has become quite the performer. She loves to have an audience so that she can entertain by singing, dancing and telling stories. Her articulation continues to improve. We are at the point now where almost anyone can understand what she is saying, and certainly if they have the context of the discussion. The funny part is that now Taylor likes to do a lot of

Taylor, Christmas Day 2011

Putting on a show!

pretend-play and story-telling. So we get a lot of "well, I thought that was what she said but I didn't think that was true..." Ahh, the true joy of having a 3-year old. She is amazing.

A few recent examples - as we left her dance class, "Mommy, it's dark outside. I need to turn on my flashlight so that I can see better." "Mommy, I like your bed. I don't want to sleep in my bed -- there are monsters in my room. I'm scared" (complete with a shudder). We are having all of the typical discussions you would want to have with a 3-year old.

More to come soon... I won't take such a long blog-cation again.

IEP, Milestones and Moments

2011-04-21T21:07:00.000-05:00

It's been on my to do list for about two months now to write another blog post... sometimes the busier we are, the more there is to write about, but the less time there is to do the writing.

Taylor continues to progress very well. Just in the past week, she ordered her own Sprite when we were at a restaurant. My phone was in my purse between the two of us at the restaurant. When it rang, she heard it first and said "Mommy's phone." We had a mapping recently and she was able to detect sound down to 5 dB. It was a sound I barely was able to detect. Absolutely amazing!

So that brings me to the current challenge - Taylor is six weeks away from turning 3, so we are going through the IEP process with the local school district. Derek has gone to a local church preschool for the past year. He is currently 4, so still has one more year of preschool. We considered sending her to the preschool that he has been attending. Our local school district has a preschool for special needs children that starts at age 3. We observed those two classrooms and tried to get a feel for what it was like and how they compare. We feel that the school district's preschool is going to be the best place for Taylor. There is a special ed teacher plus multiple para's, which gets the adult to student ratio down to 1:4. In the church preschool, there is one teacher for 12 students. The school's program allows us access to the speech pathologist, audiologist, deaf educator, and it is also in the same building and on the same schedule as the class that Derek can attend.

But what do we put on the IEP? She hears within normal levels... even in restaurants or other loud settings, we see her respond to sounds at least as well as we do (if not better). So she's technically deaf, but hears very well and doesn't need to read lips or have an FM system. Her language comprehension is on track and age-appropriate. Her expressive language is age-appropriate as well, and her articulation continues to improve. Any advice from other parents would be great!

Tonight, she said to me "I'm ready to go watch a movie." All of those words! What a sentence. We've been trying to encourage her to get the "little" words in there, such as to, a, on, the, etc. We have been working with her on past tense and prepositions. She gets it, but unfortunately she has to speak the English language, which means the rules don't always apply. For example, she said "I find-ed it!" I'm excited that she made it past tense, but now have to correct her with "You found it!" :)

We have taken a couple family trips since the last blog post. On our ski trip, we tried to get Taylor to ski, and asked her if she wanted to be a "ski bunny". She replied that she wanted to see the bunny ski. Silly us! She wears a dress or skirt almost every day -- we had to force her to wear sweats or jeans there. Derek is usually a little more reserved than Taylor, but we were able to get him on the slopes all 3 days. What a good sport!

We went to Orlando last week for our early summer vacation, since we have baby #3 on the way. Taylor swam like a fish, but got a little too comfortable having her ears off. She can now tell us whatever she needs to -- like "I want a drink"... "not that drink"... "apple juice"... and "I need a towel!" Why would she need to hear us say things like "don't jump in from there!" and "it's time to come inside"? We sign minimally and I used it as much as I could for the times that she was in the pool. It made me wish I knew more signing, but I was also impressed that she could read my lips (and expressions) quite well. It felt a little like charades at times. We are a family that likes to swim and boat a lot. I realize that I am going to have to improve our family's signing in order to make those times a little more enjoyable (for the parents... I think Taylor loved not having to listen to us for a while!)

Magic Kingdom carousel

Magic Kingdom

Downtown Disney

Genetics of Deafness

2011-02-08T18:44:00.000-06:00

Taylor has Connexin 26. This means that Jon and I are recessive carriers of Connexin 26. What is Connexin 26?

Connexin 26 (Cx26) is a protein found on the (GJB2) gene and is the most common cause of congenital sensorineural hearing loss. Connexin 26 mutations are responsible for at least 20% of all genetic hearing loss and 10% of all childhood hearing loss. In some ethnic populations, more than 80 percent of cases of nonsyndromic recessive deafness result from a mutated Connexin 26 gene. Children born with bilateral (both ears) severe to profound sensorineural hearing losses are typically referred for genetic testing for Connexin 26 mutations.

Connexin 26 mutations are genetically transmitted from parent to child in a recessive manner, which means that an affected individual must inherit one copy of the non-functioning gene from each parent. Carriers who only have one copy of the gene (i.e. one normal gene and one mutated gene) do not manifest any of the signs of the condition, but have a 1 in 2 chance of passing on the defective gene to their children (who would then also be carriers only), and a 1 in 4 chance of having an affected child if the other parent is also a carrier. This explains how Derek can hear perfectly, as Jon and I do.

Connexin 26 mutations are non-syndromic, meaning that the mutation produces only isolated hearing loss. There is NO increased risk for other medical problems that are commonly associated with hearing loss such as blindness, thyroid problems, kidney problems, or balance disorders. However, there is in a minority of cases a higher incidence of skin disorders in patients with a Connexin 26 mutation.

This is the Best Part of knowing it's Connexin 26! No associated issues with the deafness!

Connexin 26 mutations produce a pre-lingual hearing loss, because it affects the child before they are old enough to develop speech.

Why do we need Connexin 26 to hear?

The GJB2 gene contains the instructions for manufacturing a number of proteins, including Connexin 26. Connexin proteins in general are called “gap-junction proteins” which are necessary for cells to communicate with each other. Without sufficient levels of Connexin 26, the potassium flow from hair cells in the cochlea is disrupted, resulting in extremely high levels of potassium in the Corti s organ, leading to the profound sensorineural hearing loss. Connexin 26 mutations occur primarily in Caucasians, Ashkenazi Jews, and some Asian populations.

This seems like old news, since we found out about this with Taylor within a month or so of finding out she was deaf. Now, we have another baby on the way and the worry starts anew in that this time we know there's a 25% chance. Thankfully, we know what to do and how to find out this time...

I pulled this information from the California Ear Institute website. Harvard's Genetics of Deafness center has a great pamphlet of information that we found to be helpful when we confirmed the Connexin 26.
http://hearing.harvard.edu/info/GeneticDeafnessBookletV2.pdf

2010 in Review

2010-12-29T15:01:00.000-06:00

What a difference a year makes!

Last December, Taylor had been hearing only 3 months and her main word at that point was "Mama."

This December, I find it hard to list a word that she couldn't say. Some of her accomplishments over the past year include:

Can verbally identify the names of the basic colors and shapes
Can name most common animals and knows the sounds they make
Knows the names of our family members and friends
Asks questions, such as "What are you doing?" " Where did Daddy go?" "Where is my Jacket?"
Requests items such as Barbie Movie, Hot dog, Purple Tutu and Cookies.
Uses adjectives regularly in her speech (empty pocket, scary movie, mean car, funny Daddy)
Tries to count on her own from 1 - 10 (the order is unpredictable at this point)
Will say "I'm sorry, Are you okay?"
Learned the language of rural Kansas, i.e. Combines, Tractors, Cows, Horses, Boots, etc.
Developed an appreciation for music, including lots of singing and dancing.

The list goes on and on. Here are a few recent videos of Taylor.

Our Little Dancer (October 2010)

Repeating (and Anticipating) Ling Sounds in Therapy (October 2010)

As I reflect on the past year, I am thankful for the therapy and services that we have received from Hearts for Hearing in Oklahoma City and Via Christi in Wichita. I am thankful for flexible work schedules for both my husband and I that have allowed us to get Taylor to weekly appointments for the past year. I have greatly appreciated my husband's parents and sisters, who have helped us with babysitting, meals, and a place to stay during our trips to Oklahoma City. The Blog Comments along the way have been a welcome surprise! I'm so glad that Derek has been a good sport in this past year, helping Taylor to learn new words, helping to keep track of the "ears" when they fall off, and celebrating with us by announcing "Mom, Taylor Said XXX!" I'm grateful to have a husband (10 Years Today!) who was willing to sacrifice, work and worry along with me. And most of all, I'm thankful for Taylor, whose wonderful enthusiasm and attitude have allowed her to excel with language in spite of the challenge of deafness.

Taylor is a Tough One! Subtitle: Don't Mess with My Brother

2010-11-07T16:28:00.000-06:00

Ahhhh, immunizations. Is there anything less enjoyable for a parent? For both kids, I've taken them to the vast majority of their immunizations. Dad's turn! This past week, Jon had an afternoon open and decided to take the kids in for their flu shots. Derek also needed another immunization, for a total of two shots.

Jon takes the kids in together to the shot room. Three nurses come in. Two have syringes; the other is there to help hold Derek. Jon and that nurse are holding Derek down, with him screaming his little head off. Right as the other nurses try to give Derek his shots, Taylor decides to take action. She screams "NOOOOO" and rips one of the syringes out of his leg. Derek got a 3-inch scratch on his leg and we're not entirely sure if he got the flu shot as intended. Jon had to go after Taylor and attempt to confiscate the syringe and needle, which she somehow bent and did not want to relinquish. Needless to say, Taylor had to get her own flu shot after that and I'm sure she didn't go quietly. Derek was too busy nursing his own wounds to attempt to rescue her. Dad was a little frazzled when he called me to tell me the story.

Aren't siblings the best? I love that Taylor is protective of Derek. Don't worry, Derek - your little sister will defend you. I have 3 sisters, and I remember more than a few times that I took on a battle on their behalf. We hope someday that Derek will have it in him to help out when the other kids notice Taylor's "ears"... although I'm quite sure that she'll be taking care of herself. My little two-year-old tried to take on 4 adults to defend her brother. What a story!

Mom's Turn - Traveblog

2010-11-07T16:10:00.000-06:00

Well, I've taken quite a vacation from this... Life has been crazy for us lately, and though I've had many blog ideas in the past month, I haven't been able to get them posted. I have been traveling extensively for work, the only upside from that being that I've accumulated mileage status on Delta such that I'm getting free upgrades. Sweet! Warm towel? Yes, please... Would you like something to drink? Yes, please... Another bag of peanuts? Sure.

Last April (2009), we began having issues with a particular customer in Miami, Florida. Since then, my business travel has really picked up. Here is a list of the travel that I've had since April 2009. A few of these are personal; most of them are business... and interspersed with these trips are the weekly trips to Oklahoma City for Taylor's therapy.

Miami
Atlanta
Columbia, SC
Cary, NC
Miami
Phoenix
Orlando
Miami
Las Vegas
Branson
Miami
Denver
Orlando
Miami
Cary, NC
Jacksonville, FL
Kansas City
Atlanta
Birmingham, AL
Chicago
Sacramento, San Francisco, Napa, Carmel
Branson
Tampa
Atlanta
Dallas
Jacksonville
Chicago
Milwaukee
Las Vegas
Milwaukee
Atlanta
Branson
Miami (4 times in 5 weeks)
Canon City & Breckenridge
And this week, I am headed to Detroit.

Good thing I broke down and ordered a Samsonite Spinner. I have calluses on my hands from dragging my suitcase and laptop bag through the airport.

Lumps around the CI

2010-09-19T17:59:00.000-05:00

Last Thursday, I took Taylor back to the Hough Ear Institute. We always try to watch the implant area closely for redness or irritation. Occasionally, infections can occur. Taylor's dad noticed when putting on the coil that there was a lump right below the CI on her head. It felt like a cyst. We were able to get right in with our surgeon and had him take a look. He found two lumps, and started asking me about bug bites, etc. because he thought it was swollen lymph nodes associated with a skin irritation. I remembered that while we were on vacation, my mom had put Taylor's hair in pigtails and we found a little seed tick on the back on her head near that area. It was from that tick!! I hate ticks but what a celebration to know that all is well with the cochlear implant. :)

One Year Earniversary and Conversations with Taylor

2010-09-19T17:53:00.001-05:00

We recently passed the one-year mark since Taylor's bilateral CI activation. What a year it was! We made at least 40 trips to Oklahoma City for therapy and mapping appointments. That would be about 320 hours in the car and 19,000 miles on the road. I can pour chocolate milk in a sippy cup and hand out snacks while driving on the Interstate... and I can really extend an arm to save the CI's from being dismantled when boredom takes over. I think I've put off writing this blog because the one year anniversary of CI's requires a special note and brings back a lot of emotion from that time one year ago when I wrote "Just as You Are...", hoping for so much, but content with my wonderful little deaf girl as well.

Taylor's expressive language is exploding right now, as Derek's did after his second birthday. She is getting pronouns - will look at a picture of herself and say "me." She will hold the camera and say "cheese!" I can get her to "parrot" me. For example, when reading an alphabet book recently, I would say a letter and she would attempt to repeat it before I went on to read the dialogue associated with that letter. She can point out almost all colors when we name them, and can say most of them herself. A recent shopping trip went like this -- "Look! Yellow! Blue, Green, Red, White." She identified the colors to me as she found them. She will ask for a bath before bedtime and a hot dog if she is hungry (her favorite food). She is also into counting still, and now she makes it to about six.

We can have conversations, which is really fun. On Saturday, I asked her if she wanted to watch a movie. She said "Tutu movie" --translation - her ballerina movie. I looked in the cabinet and it wasn't there so I asked her where it was. She said, "Right here, Come on" and then walked into my bedroom to show me it.

Here are some recent vacation pictures.

Swimmers!

Helping Daddy Drive the Boat

A good place for a nap

I love to Swing!

Derek Loves to Swing too!

Check out my Barbie fishing pole.

Confidence!

2010-08-15T17:53:00.001-05:00

What's it mean to be a good Mom? Or a good Dad? What determines "Success"? One of my most important parenting goals is to raise children who can go out into the world with confidence.

I had a great teacher of confidence and self-esteem - my Mom. From my earliest memories, I remember that if I ever expressed any self-doubt, my Mom would reassure me and not let me put myself down. As we drove down the road when I was 3 or so, I was reading the Speed Limit signs, Stop signs, etc. My mom said something about me "reading". I said "I can't read!" She said, "Yes, you can! You're reading the signs right now!" And I realized, sure enough, Mom was right. That was the beginning of how my Mom taught me to have confidence. From water-skiing at age seven, to entering spelling bees and track meets, taking gymnastics, and playing softball, any time I thought I couldn't do it, wasn't good enough, or that someone else was better, my mom would let me know that I could do anything I wanted to. Somewhere along the way, it worked. My sisters and I are all doing pretty well now. Thanks MOM!

Taylor swimming at Papa and Grandma's House

As a parent, any time your child faces a challenge, you have a choice to make...
do you coddle them in case they fail and get hurt? or do you encourage them and let them know that you have confidence in them to be successful?

Derek swimming at Papa and Grandma's house

In early life, these are usually physical challenges... the first steps, first climbs, sitting in a big chair rather than the high chair, going down stairs, riding a tricycle, swimming, riding a bicycle with training wheels, doing a somersault. Every single one of these is an opportunity to instill confidence in your child. Mastering physical challenges in early childhood helps a child gain self-esteem that will translate across all of life's greater challenges.

Derek on the trampoline

Taylor at swimming lessons, June 2010

Derek hanging out on Papa's Ranger

Derek & Taylor in the airplane to Taylor's therapy appt

Taylor doing the Trampoline Bungee at A Grape Event, Hearts for Hearing fundraiser at Plymouth Valley Cellars

Little Miss Manners

2010-08-15T16:17:00.001-05:00

Taylor's surgery was one year ago this week. That was the scariest, most exciting day in my life. If it's possible to feel a mix of accomplishment, dread, worry, elation, agony, and anticipation, all rolled up into one big ball of nerves, that was surgery day for me. Taylor's Dad, on the other hand, was pretty calm, all things considered. He does surgery for his profession, so it wasn't as intimidating for him as it was for me.

Some friends of ours have a surgery day coming up soon for their little guy. They came to visit us recently and we tried to prepare them and reassure them of the good things in store for them and their son. Thinking of how far we have come in this past year brings tears of joy to my eyes. Sharing Taylor's successes with another family was so wonderful. If we helped them in any way worry less, hurt less, or know that their son will have an amazing life, then we are thrilled to be able to do that.

These are some of Taylor's recent accomplishments:

Burp, saying "excuse me" (She must have gotten that from her father.)

Sneeze, babysitter says "bless you", Taylor replies "thank you!"

At a drive-in restaurant, a guy walks by and she says "Who's that?" followed by "Where's my Hot Dog?"

She is doing lots of requesting, mainly around food. "Hot dog, apple juice, candy, drink"

Last night, she smelled my glass of wine and said "Mommy juice." Exactly right and stay away, please!

There are also many questions. "Where'd Daddy go?" "Where's Derek" "What's that?"

I'm waiting for the "Why"'s to begin. No hurry there. We're in a stage of "MINE"! If Derek or any other child touches Taylor's food, toys, chair, shoes, etc. (on down the list), there are a flurry of MINE's that come out of her mouth. Pretty typical of a 2-year old.

I have to admit that we as parents have been a little softer on Taylor than we were on Derek for that kind of behavior. Let's face it... if she didn't hear until she was 15 months, we had to give her some catch-up time before we felt like she understood at her appropriate age level what we were saying. Then, we went through a period of feeling glad she could say anything, even if it was "No" and "Mine" over and over again. Now, Taylor Kay, I have to warn you -- Mommy and Daddy know you know what we're saying and and we are going to be tough critics from now on!! Love, Your MOM and DAD (not softies)

Taylor's Tribute Video 2nd Bday

2010-07-20T15:22:00.000-05:00

Summer Fun

2010-07-12T14:17:00.000-05:00

Summer has been a busy time at our house! It is just flying by.

We got the rechargeable battery packs for Taylor’s Nucleus 5 processors. They are the exact same size as the regular battery packs, so – good news – all of the decorative covers and headbands still fit with them. Saturday was the best day! We got to let Taylor go swimming/splashing in a small pool for hours and hours with our neighbor’s grandkids, with her ears on! No problem, no (well, minimal) worries. With the new rechargeable batteries, they are approved to be water-submersible. At this point, Taylor doesn’t go under water. She runs and splashes around in the pool. Being able to have her “ears” on puts us both more at ease.

We did swimming lessons the week before the 4th of July. Both Derek and Taylor did really well. Derek, at 3.5 years, is swimming around really well with his life jacket on. Taylor, at just over 2, is really brave and will jump off the diving board or into the pool from the side. She has a harder time controlling her swimming movements with only the life jacket on if no one is holding the jacket. But the best part is, they both love swimming and playing in the water.

We went to see my parents for the 4th of July. I have 3 sisters and they were all there with their husbands, kids and Yorkies… we are a Yorkie family. One of my sisters just got a new puppy. Her name is Kona and she is adorable.

Taylor knew she was a “baby” puppy and went easy on her thankfully. Maverick, our Yorkie, usually is getting carted around and chased. He gets away from her more easily than Mikea, our cat. Mikea will amazingly put up with quite a bit of handling from Taylor and Derek.

Taylor keeps adding words, including tractor (followed by Yeah!) and more food words, more often. i.e.Cookie, Candy, Hot Dog, etc. She is a real eater and gets pretty excited about her meals and snacks. She also knows her manners and that if she really wants something from Mommy, "Ppppleaase." She's got that one down!
Taylor has had so many new cool experiences this summer. She spent the weekend at Papa's farm and got to help feed the cows. She has ridden in a tractor and a combine. Loved that. She has gone to Tanganika wildlife park near Wichita, where she fed lemurs and climbed to (I'm told) the tallest slide ever. I'm hoping to add some pictures of that soon. Our family is pretty active and outdoorsy in general, and we seem to never be indoors during the summer. But when we are, Taylor has mastered riding her tricycle. It is so cute. Of course, as with all of her toys, they are old news for big brother Derek until she likes them... then he wants to fight to get them back. However, with all of this outdoor fun, maybe we should be reading more with Taylor... but I know that all of the outdoor experiences -- watering flowers/spraying our dog Maverick, ant-stomping, flower picking -- create learning opportunities as well. As always, we are thankful to have Derek as her big brother and role model. We hope that she continues to learn from him, just not every little thing he does. You'll see what I mean....

Rechargeables! Yahoo!

2010-06-29T16:25:00.000-05:00

So, big news! I found out that the Nucleus 5 rechargeable battery packs have been approved by the FDA... last week. They are approved to be water-submersible. Cochlear should start sending them out soon! Just in time for swimming season --- nah, probably not, but one can hope.

Speaking of swimming, Taylor is becoming more of a swimmer. She is in swimming lessons this week. She really likes playing in the water, but it is going to be a challenge to help her learn how to swim until she can wear her ears in the water. She is sooooo observant though - she already does a pretty good job of moving herself around wearing her infant life jacket. Last weekend, we swam all weekend in the grandparents' pool. She got a lot of practice.

Taylor had her 4th mapping appointment last Thursday. It went really well. The audiologist was able to map 7 electrodes on the right side and 5 electrodes on the left, interpolating to the other electrodes (there are 22 on each side.) After her mapping, we went in the soundbooth. Taylor was able to respond to sounds at 10 dB. A normal hearing person begins to hear sound between 0 and 20 dB. From a noise level perspective, she can hear very quiet sounds.

Taylor's latest skill is counting -- sometimes we say "one, two" and she adds the "three." Sometimes she says "one, two, three" with us. When we ask her how old she is, sometimes she says "two" while holding up four fingers. Other times, she says "three!" She just likes saying Three. Usually it's followed by a jump or somersault. One, two, three - Jump! One, two, three - somersault! There's always a lot of physical activity happening in our house.

We have been doing Y week for the last couple of weeks.
http://www.cochlearamericas.com/PDFs/Speech_Sounds_Y_Semivowel.pdf

I find it interesting that y and qu sounds are both included in the Y week. Some good ones: Yum-yum, Vacuum, Tortilla, Quesadilla. Currently, hot dogs are out of favor and quesadillas are Taylor's current fave. She even tries to say it. I'd say she gets the number of syllables right, but that's it.

She has started saying more words, including Me, Mine, Tay (as she points at herself). One, Two, Three.
Cookie, Pizza, a lot of these she has been saying for a while. There is more and more every day.

At every therapy appointment, the therapist goes through the Ling sounds and asks Taylor to let us know if she heard them. Aa, ee, oo, mm, ss, and sh.
http://www.advancedbionics.com/UserFiles/File/Ling_Six_Sound_Check-6.pdf
Taylor has started imitating the sounds back to the therapist. She even covers her mouth to the hide the lip position and movement. It is too cute!

W Week and what? So many words...

2010-06-10T13:09:00.000-05:00

We did "W' week for the past two weeks. It has been fun!

http://hope.cochlearamericas.com/sites/default/files/Speech_Sounds_W_Semivowel.pdf

Wow! is a favorite word of Taylor's.

Some of her new words and phrases are:
Where are you?
Right there.
Sheena
Come here.
Choo choo train
Love you
What's that?
Candy
Cereal

Did you notice that? She's adding more verbs! Yeah!

We had her second birthday party this past weekend. It was a wonderful time. She got a Barbie bike with training wheels, dancing tutu's and outfits, a Bitty Baby American Girl doll, and several other outfits and toys.

Although she really loves her Bitty Baby, you will see from the following pictures that this birthday was all about Frosting! I made carrot cake cupcakes with cream cheese frosting. Taylor tried to eat the frosting off of as many cupcakes as she could get her fingers into. I also made the famous family chocolate birthday cake, but mixed it up a little bit with a ganache topping. It was lovely, but entirely too much effort for her when frosting was clearly her favorite. Next year, it's a can of Betty Crocker cream cheese frosting for Taylor... the guests will have to fend for themselves! Or maybe I should admit now that I am a chocolate lover and the chocolate might have been mainly for myself. :)

Yesterday was the one-year anniversary of when we found out that Taylor was profoundly deaf. I look back on the past year with amazement of the journey that our family has been on. From sorrow, grief and guilt to joy, gratitude, and determination, we have experienced it all this year.

How can you not love this kid? Streaking around the house naked and busting into a bag of Daylight Donuts, she is so full of life, energy, enthusiasm, intelligence and affection, I am nothing but thankful for getting to be her mom.

Next word -- DONUTS!

K Week

2010-05-24T13:01:00.001-05:00

Taylor is doing really well. She had a great time with the grandparents. She is talking more and more. At 8 months post-activation, her receptive language is solidly in the 18 to 21 months range, with some skills in the 21 to 24 month range. In terms of speech, she is falling in the 18 to 21 month range. This is wonderful with only 8.5 months of listening age.

This is the link for last week's G lesson.

http://www.cochlearamericas.com/PDFs/Speech_Sounds_G_Plosive.pdf

For the current week, we are doing K. Taylor loves kitties! They are her favorite animal. We are going to try to focus on helping her learn verbs. Right now, she uses many nouns, but the only real verb she says is Go. We are going to try to expand that list, and hopefully using kitties in some role play with help us keep her engaged.

http://www.cochlearamericas.com/PDFs/Speech_Sounds_K_Plosive.pdf

G is for Grandparents!

2010-05-12T10:25:00.002-05:00

This week, we've been working on G's! Derek and Taylor are staying with two sets of grandparents this weekend. They are geared up and ready to go!

I found this on another blog and thought it was great for Mother's Day.

HERE’S TO THE MOMS

Here’s to the Moms who may not have “signed up” to parent a deaf or hard of hearing child, but do so anyway with grace and love.

Here’s to the Moms who narrate every second of every day, not caring what others may think.

Here’s to the Moms who put miles on their cars driving back and forth to countless therapy sessions, doctor’s appointments, hearing aid fittings, cochlear implant mappings, and more.

Here’s to the Moms who work hard to be their child’s best advocate and primary language role model.

Here’s to the Moms who have had to learn a new language too fast full of Auditory Verbal/Auditory Oral terms and audiological jargon.

Here’s to the Moms who face the “experts” and fight for their child’s best interest in IFSP/IEP meetings and in those meetings where you are just trying to make the system better.

Here’s to the Moms who can wrestle two CIs or HAs onto a squirming toddler… and replace it 20-40 times each day, even in the car, without loosing their cool.

Here’s to the Moms who can cook dinner, answer the phone, and change a CI/HA battery without breaking a sweat.

Here’s to the Moms who constantly have to explain their child’s “equipment” and answer the question "are those forever?"

Here’s to the Moms who have ever felt the pain of having a child who is “different”.

Here’s to the Moms who never take a single word for granted.

Here’s to the Moms who never fail to astound me with their capacity to persevere… and to love.

F Week, Flu, and Fun

2010-05-09T13:18:00.000-05:00

We have focused on F words for the two weeks. We've also been a sick house for the past 9 days. We missed Taylor's therapy appointment this week. Both kids have been sick and running fevers off and on. They have pretty bad coughs and no appetite. We're pretty sure it's the influenza, but keeping in the spirit of F words, the FLU. Taylor's fever got up to 101 degrees at one point. With all that she's gone through, this is the first time she's been sick other than a mild cold with runny nose.

Even with the illness, Taylor has said so many new things.

Puppy

Ut oh

Okay? ...she asked of Derek after he fell down.

Thank You

Derek!

Sleep

Choo (as she saw a train)

Where'd it go?

Yuck

Bird

Binky

Drink

It seems like she is adding multiple new words every day and it's harder for us to keep track. That's a good problem to have! Today, we are 8 months post-activation. Happy Mother's Day!

M Week and Life Lessons

2010-04-26T21:38:00.004-05:00

We spent two weeks on M week. What can I say? Lots of important M words... Of course, Mama is at the top of the list. I will remember every day for the rest of my life that was the first sound that Taylor made that sounded anything like a word - Mama - at 4 weeks post-activation. Now, Taylor knows who her Mama is without question. She has perfected saying "Mama" for several months now. She has a beautiful "Meow", which she does as she follows our cat Mikea around the house. She can say Mikea, but it more often comes out as the Kay-ah part. She also tries to call our dog, Maverick. She'll pat herself on the leg and go "Mav, Mav." At our last therapy appointment, she cracked up Daddy and the therapist by saying "Oh My Gosh."

She helped Daddy mow the yard. I can't believe she tolerates riding on the mower with her "ears" on, but I guess it doesn't bother her. Last week, my husband took her to the grocery store and she said "hi" to everyone she saw. Several people said hi back. It's amazing... you just want to say -- hello, my deaf daughter just said hi to you. and she's not even two yet! It is so cool to witness her truly enjoying her own ability to communicate.

There are some times as a parent when it is really nice that she can communicate verbally. It is still weird to me, but Taylor makes the same sounds and words now with and without her ears on. Sometimes, she talks to herself quite a bit and we can listen to her through the baby monitor without her realizing it. Last weekend, we put her down for her nap around 2:30... didn't want it to be much later and have her up until 10 p.m. She just wouldn't give it up and fall asleep though. We were puzzled until I heard her go "Eeewwww. Peee Youuuu. Eeewwww." I looked at her Dad and said "she's poopy." Sure enough, I run up there -- Poop up her back, on her sheets, blankets and bumpy. I'm just glad she hadn't gotten to the point of sticking her hands in it and wiping it on something else. And so it goes...

I always have to throw in a little story on Derek too. He's the 3-year-old ruler of the universe, if you ask him. As of two weeks ago, Derek is a champion pooper on the toilet, after 10 months of #1 on the toilet, and no #2, we have total success!

We were taking the kids out and about one evening and offered to go to a park close to home. The other option was to go Home. Derek says "well, I don't like my choices!" He's THREE! Welcome to the real world. One life lesson down, one million to go.

He is so funny... a great big brother in some many ways. I hope Taylor keeps learning from him, just not quite in every way.

Oh SH!

2010-04-11T13:29:00.003-05:00

This week, we did SH! Lots of Shhhh!
For starters, Derek stepped in a big pile of this bull mastiff's sh** (I mean, poop.)

We washed our hair with shampoo and applied lotion. We put on our shirts, shoes, and shorts, and brushed our teeth. It finally was warm enough for some shorts.

We got to look at our shadows outside and Shake our whole bodies to the tune of Little Einsteins. We tried to encourage sharing as we toasted marshmallows. We took out the trash and washed the cars.

We finally finished all of Taylor's immunzations. (Don't forget that the words with "tion" are also SH words.) We still had a few 12-18 months shots left, but they are all done as of Friday. Yeah! No more until kindergarten.

We visited to local Wildlife and Parks museum to get up close and personal with some fish. Today's Sunday; maybe we can go get a milkshake later.

http://www.cochlearamericas.com/PDFs/Speech_Sounds_SH_Fricative.pdf

I have to say, there are a lot more words with SH than I ever realized. It was a fun week. Taylor is talking more and making more sounds all the time. She had one great day filled with "Dada" this weekend. Maybe D week is paying off a couple weeks later.

D Week! Hoping for More Dada's

2010-04-07T10:25:00.000-05:00

Last week was D week at our house. We brought out everything D, including lots of time with Daddy since it was Easter weekend. We danced, dipped our hot dogs in ketchup, and road lots of rides at Silver Dollar City.

Oh, yeah, another D... We drove, and drove, and drove some more. We drove from Kansas, to Oklahoma for a therapy appointment, and then we drove on to Missouri, then back to Kansas on Sunday. We are thankful for the big D in our lives at these times, namely the DVD! It helps to make the drives bearable.

Here is the link to the Speech Sounds D week. It is fun!
http://www.cochlearamericas.com/PDFs/Speech_Sounds_D_Plosive.pdf

We played with dolls, talked about dirty diapers, watched the ducks, and fed the dog. I think Taylor spent half of the weekend chasing my mom's dog. She had a great time with him. We have a dog who is around five years old. My mom's dog is still a puppy, and he had the best time running from Derek and Taylor.

P WEEK

2010-03-24T18:23:00.000-05:00

It's "P" Week at our house!

Well, it started with the kids on Sunday before I had even announced it was "P" Week.
Taylor is really good at fighting while getting her diaper changed, and a poopy diaper fight resulted in my getting a poopy bottom flipping over in my face and getting poop smeared on my chin. As I'm finishing the cleanup from that, Derek wants me to assist him in the bathroom because he has decided to start peeing standing up, rather than sitting, and has peed all over the seat and floor. I had rushed away from Taylor before getting a fresh diaper on her, and when I came back to her, she had peed on my bed. Later that day, Derek peed on the floor in the bathroom two more times while trying to figure out how to pee standing. Why he decided to start it on that day when his dad was at work is beyond me. And this was all in one afternoon.

The next day, we annouced it was "P" Week. The Cochlear website has some really helpful educational materials, including Speech Sounds. Please see the attached link:

http://www.cochlearamericas.com/Support/2294.asp

It has a weekly/bi-weekly instruction guide for various consonants, complete with associated activities, words, books, songs, foods, etc. It is great! We are going to cover a consonant per week. It is working double-duty for both Taylor and Derek (age 3).

As I said, this is P week. Our dog Maverick celebrated on Monday by eating a mouse/rat/baby rabbit and then PUKING in our house. The P's continue...

On Tuesday, Derek started at Pre-school. He was terrified when getting dropped off, but perfectly happy about preschool when I picked him up.

So far this week, we have

Popped bubbles

Ate pizza, pineapple, and peanut butter

Napped!

Peeled carrots

Listened to a purple piccolo dinosaur on Little Einstein's

Hopped like a frog

Poured Sand

Ate Spaghetti

Wiped Up

Patted and clapped to music

Played with a Purse

and experienced Pee, Puke, and Poop.

We are loving P week and all of the language learning opportunities and ideas that it is giving us. Check it out! 19 weeks to go!

Bling It! and More Words

2010-03-15T08:45:00.014-05:00

Taylor is a girly-girl! We like to decorate her headbands and CI covers to go with her outfits. We have quite a collection of headbands now, and have 4 sets of the CI covers so far. See the "Hoorah for Headbands" blog for more information on the headbands.

Taylor is talking more. She is saying a lot of words on her own without my prompting, and then her repeating.

Our neighbors got a new kitten, and she said "Baby Kitty."

Derek was going potty and she said "Pee pee."

Daddy got home and she said "ya-ya". Sometimes we have heard her say "Dada", but more often it still comes out "ya-ya".

She can point to her eye and say "eyes."

We have a mapping appointment this week. It has been about 3 months since the last mapping. We're hoping for even better results after this appointment.

This week, Grandma and Grandpa were here. Grandma asked Derek to do something, and he said "Noooo!" Then Taylor helped the cause by adding her "NNNNooooo!" My mom thought this was pretty funny. We have Skyped with them, but they hadn't seen Derek and Taylor since early January. They were impressed by her progress.

On the blog design, I had to take off the side posting about Words Taylor Knows; it got too long months ago so I gave up on tracking that one. I am still tracking Words Taylor Says. I know that she does say more words than this, but I try to remember as many as possible. She is starting to add more words daily.

From the Parent’s Perspective - Teaching Materials, etc.

2010-03-08T06:50:00.005-06:00

Another month has gone by! How is that possible? Well, in the past month, I’ve been to Jacksonville, Florida; Birmingham, Alabama; Kansas City; and Oklahoma City (3 times.) I am feeling like a road warrior and the road is starting to win the battle. I travel for my job, usually once a month or so, but it has been more frequent in the past few months, averaging around twice a month. Those were the trips to Jacksonville and Birmingham. The Kansas City trip was for fun, to catch up with family and friends that we haven’t seen in a long while. And every Friday, we drive about 8 hours roundtrip to take Taylor to her weekly therapy appointment. I’m actually writing this from the airport in Memphis. Not much else to do in this airport – now at Atlanta’s airport, I could go to the Xpress Spa for a pedicure. Maybe another time…

Taylor is now 21 months old, and in a few more days, it will be six months since her activation. While so much progress has been made, the worry and analysis endures. Are we doing the right thing(s)? How much therapy is enough? Should Mom keep working? What’s the right place/type of therapy? Does Taylor need to go to an AV pre-school (necessitating a family relocation?)

Last weekend, when we spent the weekend with friends who have a daughter who is almost two and a half, I worried that Taylor’s Dad would be making constant comparisons of the girls and how Taylor was progressing. It’s kind of a double-edged sword because although we know how far Taylor has come in less than six months, we do want to compare her to other kids to see how she is doing – is she comprehending at an age-appropriate level? Is she speaking at an age-appropriate level? What would she be doing if she wasn’t deaf and could have heard from the time that she was born? We are always between the happiness that she is progressing well and the fear that our happiness with her progression could lead to complacency. How good is good enough? Is there a point of “good enough?” Enough work, enough reading, enough words. There are still the rare times that it flat out makes me mad that she has to go through all of this and couldn’t have just been born hearing like most kids. The 5 hour surgery when she was really still a baby. Learning to comprehend sound. All of the extra work to do something that doesn’t come naturally to her.

Our babysitter quit and last week was her final week. This week, we’ve had super-Grandma Cherie watching the kids and they have been having the best time. Next week, we have a new babysitter starting. This will be the third one since Taylor was born. I really hope she stays with us for a long time. It’s a tough transition for the kids and for the parents.

Derek is going to start pre-school now that he’s 3. It will be 3 days a week for about 2.5 hours, a great opportunity for him, and allows for some one-on-one time with Taylor. Working with her at home (i.e. books, language development games) has been a challenge. We really have to split up and each take a kid. The simple books that we try to read with Taylor are not enough to keep Derek’s interest. Due to my travel for work and Dad’s work schedule, a lot of times in the evening, only one of us is there, so one-on-one time can be a challenge. They’re only 17 months apart so these challenges are typical in some ways of any family with 2 toddlers close together.

There are a couple of learning tools that we have been using for both Derek and Taylor. The Your Baby Can Read set is great. There are videos, books, flashcards videos, sliding word/picture cards. They are nice for infants. We got the set when Taylor was 9 months old and she really enjoyed them at that time. At 20 months, they don’t hold Taylor’s interest. The books, flashcards, and sliding word/picture cards are all great. They allow for us to do “audition” first, saying the word as she sees it in written form, then sliding open to expose the picture. They are great! Our 3-year-old son also enjoys these cards and books. The pictures are very realistic, mostly photographs of actual objects/forms rather than cartoonish illustrations like some baby books. I can see them continuing to be useful until kindergarten or so because it will help them with sight words.

After we found out Taylor was deaf, but before we had the CI surgery, I bought the Signing Time set of videos and books. The videos are really cute with good music. They show the written word as they verbalize it, and then show children making the signs for it. They usually show very cartoonish illustrations of the subject at hand. Overall, the videos are really geared toward a hearing child who is learning to sign for fun and to encourage earlier communication. I personally found them frustrating because from my deaf child’s perspective, I couldn’t see how she could possibly learn to associate the sign with the subject because the pictures were cartoonish and shown minimally as compared to showing the children doing the sign while they said it. I would only encourage these if your child can hear normally or with hearing aids or CI’s. As for the books/supplemental materials, I wasn’t happy with these either because the illustrations are cartoonish and more focused on showing the signs rather than the subject.

We have loved the DVD collections of Baby Einsteins (for 18 months or younger) and the Little Einsteins (for about 15 months and up). They have been wonderful and really encourage active listening.

ORLANDO

2010-02-05T17:17:00.021-06:00

We just returned from a family vacation to Orlando. What fun! We had beautiful weather for the entire trip, several days above 80 degrees. Taylor and Derek enjoyed the trip, starting with two airplane rides. They were so excited to be on the airplane – Taylor even said “airplane” a few times. It helped that she had Derek to imitate. He loves planes, and it has rubbed off on her. In fact, when we landed in Orlando, after leaving our house at 4 a.m. and taking two plane rides, Derek wanted to know if we were going to get on another airplane. In Orlando when we landed, they were so fascinated with the planes and the baggage handlers that they stood at the window for a good while, even getting the baggage handlers to wave at them. There was a lot of time spent at the pool, which they loved. I think it’s good for the soul to get outside in the sunshine and warmth in January, when you are really getting tired of winter’s cold, dreary weather.

We went to Sea World for two days, and Disney’s Magic Kingdom for one day. Here are a few pictures from those parks!

Mommy and Taylor at It's a Small World ride

Carousel

SHAMU

Taylor LOVED the MANATEES!

Taylor and Derek with the Dolphins

I’m sure that any of you with little ones know what it’s like to ride elevators with two little kids, both so excited and wanting to be the one privileged button-pusher. We were on the third floor at our resort, so there were a lot of elevator rides for the kids to practice. Taylor tried to say “elevator”; she got out the right number of syllables and you could tell that was what she was trying to say.

Every time we take a little vacation, I’m reminded of why they are so needed. It reminds you that there’s a world out there besides the mundane work of daily life. While it’s winter now, we have sunshine and spring coming our way. For children, it provides chances for expansion of the mind, as well as an opportunity for family togetherness and bonding. This was our first trip since we found out that Taylor was deaf and began this CI journey, and it was much needed.

For Taylor, I think she might have been a little worn out by the end of the trip. On the third evening in Orlando, we were seated by a waterfall at RainForest Cafe, enjoying the aquariums and views. Of course, this was after a very long day at Magic Kingdom. I was holding her and walking around the restaurant to give her better views of the aquariums when I noticed that she was missing an "ear". I retraced my steps and ended up back at the table -- no CI. We started looking under the table. A couple seated next to us noticed the commotion and panic, and kindly mentioned that they had seen Taylor throw something into the waterfall. WHAT?!?! Jon and I both had our arms in the waterfall, digging around everywhere. It was kind of bubbly so difficult to see. I asked the waiter to get the waterfall turned off. It took them a little bit, but finally, it went off and we were able to pluck the CI right out. We let it dry out and it worked fine the next day! Here's the waterfall!

Freeze Dance!

2010-01-10T15:30:00.006-06:00

It's getting harder and harder to write the blog, because Taylor is seeming more and more like a "normal" hearing kid... which makes me more happy than you can possibly imagine!!

Her most recent new word is Papa!! We still haven't gotten a Dada out of her yet though, poor Daddy. She must be saving the best for last.

She is regularly saying Mama, Bye, Hi, Meow, and several others. No "D" sounds at all yet.

Taylor just passed the 19-month mark. In the past few weeks, she has gotten to be really good at putting the coil back on her head by herself. If she loses an "ear" all together, she'll walk right to us to get it fixed... that is, if she is in a good mood. If she's irritable and tired, sometimes she rips them off just to get our attention.

She loves music, and has become quite the little dancer. Taylor is an excellent imitator. We watch "The Little Einsteins" quite a bit on our therapy trips to Oklahoma City, and I think she imitates June, the dancer. She just gets up on her tip-toes, prances around, and spins in circles. So cute!

Over Christmas and New Year's, we also had our anniversary and Derek's 3rd birthday. Taylor got to go sledding for the first time. She was a good sport about it, considering how cold it was.

Christmas gave us and our families the chance to load Taylor up with noisy toys, like a guitar, microphone, speaking/learning toys. She also got a play kitchen that she really loves. I am thankful for all of these new toys that allow us to role-play and add verbal opportunities into her normal playtime activities.

Loving the Nucleus 5 Processors

2009-12-18T19:30:00.007-06:00

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!

2009-12-08T09:25:00.008-06:00

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

2009-11-30T10:55:00.002-06:00

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

2009-11-12T12:35:00.000-06:00

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...

2009-10-26T14:42:00.000-05:00

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

2009-10-14T15:10:00.000-05:00

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!!

2009-10-10T14:39:00.000-05:00

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

2009-10-01T10:36:00.000-05:00

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!

2009-09-23T12:32:00.001-05:00

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

2009-09-20T21:06:00.000-05:00

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!!

2009-09-13T15:16:00.000-05:00

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...

2009-09-08T14:23:00.000-05:00

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!

2009-09-01T15:29:00.000-05:00

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?!?!

2009-06-08T14:03:00.000-05:00

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.