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 second surgery



Lauren just before her surgery



Lauren had her second surgery on August 7. It went so well! The actual surgery took about two hours. We stayed at the hospital until about 9 hours after the surgery. We wanted to let the effects of the anesthesia wear off and make sure she wasn't nauseous and could keep pain medication down. All went well. That night, she ate a regular dinner and played around, walking and crawling normally. One of the possible side effects is to have balance issues for a few days after the surgery, but we didn't witness any problems with balance at all. I know we are so fortunate that we have had 3 surgeries now, between Taylor and Lauren, all without incident. Considering that when I found out about Taylor's deafness and made the decision to do CI's, the surgery was one of my biggest concerns, I now feel such a relief and want to share that this really was a blink in their life. And the benefits are so boundless.




Lauren trying to do "gymnastics" the night of her surgery



We continue to see great progress with Lauren. For the first 6-7 weeks after activation, we used the Hanna Anderson pilot caps to keep her hands from the CI and headband. Since then, she has really been leaving it alone (other than the car seat where the coil gets knocked off anyway). We actually have more trouble keeping Taylor's ears on than Lauren, because Taylor is continuously doing cartwheels and handstands. We are going to harness that energy and have enrolled Taylor in both gymnastics and tumbling this fall.

Lauren's activation on the right side is tomorrow. We can't wait to see how excited she is when she can hear with both ears!!



Taylor starts in a new preschool next week. It will be 5 days per week for 2.5 hours in the afternoon. Derek started kindergarten last week. Taylor is really as bored as can be without her big brother, aka side kick since birth... So preschool cannot get here fast enough. Every time I turn my child over to someone new, it's an education process. What is a CI? Can she really not hear without it but still speak normally? Can she hear me from a distance? And wow, how does she talk so well? You really can't tell she is deaf ... That's kind of how it goes. I try to continually educate and promote the benefits and absolute success of the technology in helping these kids to hear. You never know who it might help or impact along the way. I am so proud of Taylor and where she is at today. We are hoping for a great year!



Derek and Taylor swimming with Grandpa









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

Taylor Talks!!

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

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

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

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

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

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

Another Dimension!!

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

Day 1:

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

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

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

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

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

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

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