Hearts for Hearing Groundbreaking Ceremony

Hearts for Hearing has been working on a capital campaign to build a new building of their own with plenty of space and sound booths for their continued growth.  I'm so glad we were able to make it to the groundbreaking ceremony for the new building. Hearts for Hearing​ has been such a part of our lives for over six years... from the beginning evaluation soon after her diagnosis of profound deafness for Taylor in 2009, and the cochlear implant surgery only 10 days later, followed by weekly therapy visits for two years.  Then to our Lauren's birth and deaf diagnosis at 6 days old, when they said it was okay if we cried, they have been there through it all for us.  All of the worries, the fears, and the successes.  The ear molds for the hearing aids, the CI activations, the failed mappings with a stubborn toddler... I have no doubt that our lives and the girls' successes could have been much different if we had not gone to Hearts for Hearing early on after Taylor's diagnosis at 12 months and continued going there.

At the groundbreaking ceremony, we saw so many key people that have helped the girls along the way.  Dr. Wood, the surgeon who performed the CI surgeries on both girls.  Joanna Smith, the HforH current CEO, was Taylor's first speech pathologist/auditory verbal therapist  and was really the first person that gave us hope that Taylor would listen and talk someday.  She came to hospital and checked on us as Taylor was beginning her bilateral CI surgery at 14 months, fully expecting that our family could use some comfort and reassurance.  Tami Elder, our current auditory verbal therapist, was there along with her family members.  Tami has been Taylor and Lauren's AVT for so many years now; she's practically a family member.  We also saw some old friends who we had started the journey with - a mom with a son around Taylor's age, whom we had gotten to know at the Listening to Littles 2-year old weekly class that Hearts for Hearing sponsored.  Dr. Jace Wolfe, a brilliant audiologist and researcher, has done our cochlear implant mapping for years now; my girls think he is just a regular goofy dad who can help them with their "ears."

The groundbreaking ceremony was an amazing moment for Hearts for Hearing, an organization that truly transformed lives for so many families, including mine.  I'm so thankful for them and will do everything that I can to help the organization continue to progress.

New Words for Lauren at 21 Months

Drumroll, please....

These are all of Lauren's words at 21 months.  She doesn't say all of them perfectly, but they are strong and consistent attempts at these words.  We are so excited.  The hearing birthday for the left ear is 2 weeks away.  

Lauren's words
Open (oben)
Ut-oh
Dog
Da-da
Nana for banana
Duck
Quack
Owl
Whoo hoo
Gah (for God) -- she tries to sing "Our God is an Awesome God"
Eye
No for nose
Grandpa
Grandma (solid attempts)

Backpack -- since big brother and big sister are going to school

Bath
Bubble

Meow

Book

Hot

Owie

Bus

Light

Drink

Mama

Ball
More

I'm sure there are more, but these were the ones I could think of.  She is off and running with spoken language!  I am still waiting to see a consistent name for Derek and Taylor, and our cat mikea. She calls our dog maverick "maa".

Physically, Lauren is small (compared to how Derek and Taylor were) but ultra coordinated. She made it up our rock climbing wall on our playset at 20 months. We are constantly chasing her.

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









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

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

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

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!

Dancing!! and other humorous moments...

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!

We want Cochlear Implants, stat!

There is such a range of emotions that parents experience when finding out that their child is deaf. I won't expound in great detail on it, but I will say that I have relived every day and every memory that I had of Taylor back to her birth, how she reacted to certain situations and what I would have done differently had I known that she was deaf. But I am a person of action, and revisiting the past isn't going to get us anywhere. What to do? We had done research before the diagnosis, and knew cochlear implants would be our preference for Taylor if she was profoundly deaf. Let me give you an idea of what the summer was like: June 8 - ABR, diagnosis Profoundly Deaf; first appointment with otolaryngologist/CI surgeon June 10 - CT scan to rule out tumors and ensure the anatomy was normal and would allow CI June 12 - Second appointment with otolaryngologist; Speech therapist appointment June 15 - Pediatric cardiologist appointment to rule out any syndromic deafness with associated heart conditions. (None found) June 19 - Appointment with Audiologist. Taylor got her hearing aids. June 26 - Speech therapist appointment. No benefit shown with the aids. July 21 - First appointment with new otolaryngologist at Hough Ear Institute in OkC. Genetic testing sample taken. July 27 - Audiologist appointment. No benefit with aids. July 27 - Wichita Otolaryngologist appointment. Their Goal for her CI surgery, on one side - November. Taylor would be 17 months old. Not acceptable to us. July 28 - Genetic testing results, 2 recessive copies of Connexin 26 gene mutation. August 3 - First meeting at Hearts for Hearing, our audioverbal therapy center in OkC. August 10 - BILATERAL COCHLEAR IMPLANT surgery at the Hough Ear Institute!! Age 14 mo.

This glosses over so many important decisions that we had to make along the way: To sign or not to sign (We are!) ASL or SEE or Baby Sign? We selected SEE, Sign Exact English. Nucleus Freedom or Advanced Bionics - selected Cochlear's Nucleus Freedom. Implant on one side or both? BOTH! Simultaneous or Bilateral surgery? She had both implants done at the same time. What colors of implants? What types of processors? What causes deafness? How do we get genetic testing? Do we drive 7 hours roundtrip for audioverbal therapy for the next few years? And then there are all of the long-term decisions that we'll have to make -- will we have to move to a larger city with better access to schools and therapy? With a 25% chance of having another deaf child, should we have more children? And how do we get involved to make the process easier for the parents that come after us? CI Activation Date: September 9, 2009. Location: Hearts for Hearing, Oklahoma City

Our daughter is deaf?!?!

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.