Lauren's Cochlear Implant Activation

Lauren's cochlear implant activation on the left side was yesterday. She did very well. We were able to get a response from her and set the lower limit thresholds with beeps... Then the fun part where we got to talk to her for the first time. It was a breathtaking moment for all of us. She was just curious and had an amused look on her face. Big difference from Taylor's crying when she was activated at 15 months. I think a part of that was that Lauren was only 9.5 months, and Lauren had always worn hearing aids... She at least knew there was such a thing as sound, although it had been very far and distant. Channel 4 in Oklahoma City filmed the activation because it was the earliest surgery and activation ever done in Oklahoma. Here is a link to the new story: http://on.kfor.com/0k3t6vT Youngest Okla. baby to get gift of hearing Taylor and Derek were so excited to see Lauren her new "ear.". What a family moment! We are going to post more pictures later, but we are moving over this weekend. I can't wait to see what the next year has in store for us. Lauren will be learning to listen, and eventually speak. We are thankful beyond words.

Taylor's Turn

I really wanted to focus on catching you all up on Taylor.  We're going to have lots to come on Lauren, since her first CI surgery is only 8 days away. 

Taylor has had quite a year!  She has been in the special ed preschool here in town this year.  She loves going to school and seems to have a great time.  She sees the deaf educator twice a week and has speech twice a week during her preschool time.  We have all seen great improvement in her articulation.  She has just learned so much.  We are now 5 weeks away from turning 4 years old. 

We did some testing around the 2 year, 6 month listening age mark.  For the Expressive Vocabulary Test and the PPVT, she tested like the average 5 yr 7 mo to 6 year old, respectively, or in the 99th percentile.  Amazing. I never would have believed it possible three years ago.  What a blessing in my heart as we approach Lauren's surgery.  

What a year "3" has been!  We celebrated her 3rd birthday at Table Rock Lake and Branson.  We had family birthday parties at the lake.  We rode go-carts and waterslides in Branson, rollercoasters at Silver Dollar City, and took a skiboat out of the lake.  The girl is fearless!  Last summer, just as she turned three, she was doing dives and flips into the pool.  We utilized a water-proofing and swim cap method for her to use so that she could keep at least one CI on while swimming.  It was a great summer. 

We took a family ski vacation in January.  Taylor went to ski school two days, and skiied with us another 3 days.  She seems to be a born skiier.  I'm going to have to take some lessons myself so that she and Derek don't pass me up in a couple of years.

We are moving to a suburb of Wichita next month, so new schools are being explored.  The IEP renewal meeting is scheduled for May 11.  Next year, we are planning to have her go to a wonderful Christian pre-school for three half-days per week and supplement with some AVT/speech services.  We did her testing for the new school district that we are moving to last week, and she did exceptionally well.  I think I know more about what to ask for...  we'll see.  As a parent, I am continually learning more about how to advocate for her and how to describe her uniqueness. 

Sometimes I wish the CI's were invisible.  I don't want CI's to affect other's perception of Taylor.  Especially in the academic setting, I don't want the visual reminder to cause teachers to underestimate her abilities.  I was really nervous about that last year as she entered the public school system.  I'm not sure what their (the teachers) perception of her was at time.  I do know that now they realize and acknowledge how well she is doing.  I'm thankful to the wonderful ladies that have worked with her this year - Misti, Deb, Ani, Brittney and the para's too (wish I knew all of their names). 

I have a feeling it won't be too long before Taylor wishes they were invisible.  The other day, she said "Mommy, when I grow up, I won't have 'ears' anymore."  I hope we find a way to always make it positive as she grows.  Even as a toddler/pre-schooler, she is obsessed with growing up and always talking about what that means -- getting married, having a baby (named Lauren), being a doctor (like her daddy), wearing makeup (like her mommy)...  you name it, she's thought of it.  That day, she had noticed that she had 'ears' and I didn't.  We make the 'ears' as cute as possible, with all of the Cochlear decorative covers and headbands matched to her outfits.  We'll talk through it more when the time comes.  For now, she's pretty excted that her little sister is getting ears just like hers. 

My favorite words to describe Taylor:

Loving

Brave

Beautiful

Brilliant

Fun

Generous

Stubborn

Rockstar

Taylor with her fish she caught and a turtle at her feet

Taylor and Aunt Melissa

Taylor and our nanny Sheena

Loving Lauren - Countdown to CI #1

We have had hearing aids since Lauren was about 3 weeks old. We put them on her every day consistently, although it has gotten harder and harder to get her to leave them alone.
The hearing aids are Phonak Naida, very powerful but not overly large HA's. They were loaned to us by Hearts for Hearing.  Thank you!  Since it was known right away that Lauren would ultimately need cochlear implants, this is an interim solution.  Hearts for Hearing attempts to provide hearing aids to families who are residents of Oklahoma through donations.  In Kansas, or at least in the Wichita area, hearing aids can be provided through the Children's Miracle Network funding.  Hearing aids are about $1600, so not a small expense. For kids who are going to get CI's in a few months, it makes sense to take a loaner approach.

Lauren's first hearing aid fitting

We have had at least one set of earmolds each month. To keep the hearing aids on her head, we originally started out using these little dual-sided sticky tapes called Stick n Stays (made specifically to fit the hearing aids). They are pretty pricey. For the past couple of months, we have switched over to lingerie tape. Ahh, yes, apparently there are many uses for lingerie tape. We are going through it pretty fast because Lauren rips them out about as fast as we can get them put in. It started when she was about 3.5 months old. She has since perfected the technique. I think she knows at this point that she can get our attention if she does that. Sometimes she uses the earmold as a chew toy if we can't get it from her fast enough.

Lauren getting earmolds

Lauren in Auditory Verbal therapy

We have done sound booth testing twice with Lauren.  It seems like she might have responded to sound at around 120 dB, but at that point, it could be vibration....  nevertheless, we are seeing minimal or no response with the hearing aids. 










We are anxiously awaiting the first CI surgery.   We expect it to be in mid-May, barring any surprises.  That will be at 9 months of age.  We have talked with our audiologist, and should have the first activation within two weeks.  :)  Big Smile!  We can't wait for that day.  With Taylor, her surgery was bilateral at 14 months, but the activation wasn't for five long weeks after the surgery...  it didn't have to be that long, but all of the audiogists schedules were full, so we had to be patient. 




We had an MRI for Lauren as a prerequisite for surgery.  All of the anatomy was normal and there is no other pre-surgery requirement for us beyond insurance pre-approvals.

Lauren on the day of her MRI with our friend Dr. Jackson

So, although we have a long road ahead of us, Lauren will have access to sound a full 5.5 months earlier than Taylor did...  and considering how well Taylor is doing, I am thrilled to know that Lauren's potential should be unlimited.

Taylor and our AVT Tami

Big brother Derek loves Lauren.  He's never too busy to give her a kiss on the head as he runs by.  He has asked some questions about her ears.  Now, he's figured out that Taylor's ears and Lauren's ears aren't like his, and he knows that Lauren will eventually have the cochlear implants.

Derek and Lauren

Taylor is about the best 3-year old big sister that I could have imagined.  She dotes on Lauren, is sad and tries to get us to make her feel better when she is crying.  She is around Lauren so much that during the couple times that we have left them with a babysitter, Lauren does much better if Taylor is there with her.  When Taylor's not in the room with the babysitter, Lauren gets upset.  As I reflect back on Taylor's time as a baby, I realize she was probably the same way with Derek.  Other than with our every day nanny, I only remember leaving Derek and Taylor with a babysitter once, when he was 2 and she was 10 months.  She got really upset because he was scared and upset.

Siblings are the Best!

    As a mother, I am so thankful that my children have each other.  Siblings are the best support network.  They learn from each other, play together, and most of all, love each other.

Welcome to the World, Lauren!

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

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

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

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

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

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

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

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!

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

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

Summer Fun

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....