Lauren and her two ears

 Lauren had her First Birthday just two days after her second CI surgery.  She was feeling great, running around and playing with our family members who made it to the big party and celebration.  If you look closely at this picture, she has a bruise on her cheek, which was left from the facial nerve monitor.

Lauren's 1st Birthday

She has been walking really well since around 11 months.  In this picture, you can tell - she is on the move!  We were waiting outside for big brother Derek to get home from school.

Lauren is on the move

Big brother has some greeters after school

 Lauren's activation on the right side was on August 30. It went so well. When we were playing the beeps and going through the electrodes, she would wave and acknowledge the sound right away. It has been an easy transition to two "ears".

Waiting with big sis Taylor for 2nd CI activation

Activation of right CI, with Tami

 We actually went back the next day to make sure the electrodes were all set properly and gauge her reaction to sound, ensuring we didn't see any kind of negative feedback.

Day 2 of right CI activation

 Lauren is so lucky (and Mom & Dad are so thankful) that we have a listening coach for Lauren in big sister Taylor.  She is just the best big sister, all around!  As a parent of a CI baby, one of the toughest things to deal with is not being able to ask the baby -- "how does that sound?  does it hurt?  what does wind sound like?  is that ... (fill in the blank) too loud?  is it irritating?"  They can't speak for themselves so we try to be especially sensitive and aware.  We are so glad that we can ask Taylor those questions now, and that she can help us understand what might be happening with Lauren's new "hearing."  And we know that when they get a little older, they might feel different and having each other's understanding and support will be a comfort.

Taylor's ears got pierced!

 Taylor got her ears pierced!!  Both sides...  it might have taken a little coaxing and two trips to the store, but we have two pierced ears now.  She is pretty proud!  Pre-school for Taylor is going very well.  She goes 5 afternoons per week.  She is in a local Christian preschool.  The local school district special ed coop is providing deaf education and speech pathologist services.  She has no speech deficiencies other than age-appropriate challenges, such as the pronunciation of L.  We continue to work on proper word order and grammar, although those challenges are also typical for an early 4 year old.  The deaf educator is working on issues such as classroom acoustics, how Taylor performs in background noise, and general language acquisition.  She is a good resource to us, as we prepare for Taylor to be in the public school system, as well as to the pre-school teachers at school.

We are filling Taylor's time outside of school with fun things such as Gymnastics, Tumbling, Dance and Swimming lessons.  Lucky for us that the YMCA providing these classes is only 5 minutes away; otherwise, we would be doing too much running.  On the weekends, both Derek and Taylor are playing soccer.  We are managing to keep the "ears" on in all of these activities.  It takes a little creativity but the effort is well worth it.

I continue to be amazed at the awesome responsibility we have as parents...  as we see our 5 year old son grow, we are starting to really have to coach through self-esteem, teamwork, confidence...  all kinds of values-based issues that will only get tougher.  It makes the academic learning seem easy at times.  Being a parent can be tough!

I also am absolutely impressed at the ability of the human mind to learn.  Lauren just picks up things through observation.  Hand her a toothbrush, and she will brush her teeth.  Hand her a hairbrush, and she will brush her hair. If she sees a purse, she will carry it around on her arm.  Let her walk around outside, and she will eat a rock.... Now, wait a minute?  Who did she see do that?  ha ha ha.  Babies and the things they will put in their mouths.  But in all seriousness, she is always watching, listening, and learning.  I have read that 90% of language acquisition is through incidental learning, and I believe this is accurate.  So with that in mind, I hope our whole family keeps on being the loud, crazy communicators that we are -- Lauren will be overwhelmed with the incidental language of love!

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

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.