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Keeping those CI's on

How do we as parents keep the CI's on? That is one of the most fundamental challenges for parents of a CI kid. If the ears aren't on, then they aren't hearing.

My kids are all three ultra-active and I recognized this as my biggest issue with Taylor when she was activated at 15 months. At that time, we started using headbands with elastic loops seen into them, made by a local CI grandma. These are still our go-to method with Taylor, at age 4, as well as Lauren at 15 months.

Taylor participates in lots of sports, and so far we have been able to keep her hearing in all of them.

For dance, gymnastics, and soccer, we use our typical headband with 2 barrettes to ensure that the headband stays in her hair. This has been sufficient, except for when she does a forward roll where her head actually touches the mat ... If the coil pops off, she just replaces it and goes on.

For swimming, we use one CI and make a waterproof bag for it using a Foodsaver. There are several YouTube videos out there on how to waterproof a CI using the Foodsaver. Anyway, we put her hair in a regular ponytail and secure the bag in place with 2-3 barrettes. Then we cover her head and the bag with a swim cap (Lycra, not Latex). This works great! Diving in with flips and all, it stays in very well.

This week we are snow skiing. We do have her wear a helmet, and basically use the swim cap as we so do with swimming to hold it in place. We put on the ears with a headband. No waterproof bag is needed. We do not put her hair on a ponytail though, unless it is down low at the nape of her neck... Otherwise, the helmet wouldn't go on. So it goes in this order: headband with Ci's, swimcap, then helmet. Amazingly, she seems to be able to hear pretty well with the helmet on.

I hope this is helpful!

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









Mama wins again!

LAUREN - One down, one to go!
It has already been 8 weeks since Lauren's activation. It has gone so smoothly. It has really felt very natural for her to begin listening. At first, I noticed her paying attention to our voices, our dog barking, etc. I noticed that if she heard someone laughing, she would turn and look and usually start laughing too. If she heard a sudden noise, she would look up and try to figure out what it was. One of the first big moments was about two weeks post-activation - I was rocking her to sleep for a nap while singing to her, and when I finished the song, she turned to look at me and see why I stopped. Such a simple thing, yet it spoke volumes to me. Gratitude fills my heart. 

She is now saying Mmmmm when she wants me and it is getting closer to Maaama.  I love it!  She also makes a bbbb sound, aaahhh sound, and other imitations such as sneezes, coughs, etc.  We are having a great time playing sound games with her.  She thinks a lot of sounds are hilarious.  I think she loves how her new "ear" helps her keep track of where her big brother and sister are and what they are up to.

We are using a headband with loops sewn in to keep the CI in place.  Lauren can easily take it off though, so if she gets in that mood, we put a (Hanna Anderson) pilot cap on to limit her access to the ear.  With baby eating, that usually means I am washing at least one, if not two, pilot caps each evening to have clean and ready to go for the next day. 

Lauren started walking this week, so we are now trying to encourage her to take more steps and gain confidence with each day.

We have Lauren's right side surgery scheduled for August 7, with activation on August 28.  She will have a nice bandage on her head for her 1st brithday, but we are so thankful that she is going to turn 1 with both cochlear implants surgeries completed and a lifetime of listening ahead of her. 

TAYLOR - Amazingly Brave
Taylor is doing great!  I will post a video soon of her.  She is very into Barbie movies and loves to sing and dance along with the movies.  She is now a super swimmer.  We have perfected a waterproofing CI/swim cap method that allows her to keep an ear on to hear when she swims with us.  Taylor started gymnastics last week...  so far, we haven't had any retention issues because we are using the headband.  If we do, I think I'll try using the swimcap to really hold the coils on well.  Over the weekend, we went to Branson and to Silver Dollar City.  Taylor and big brother Derek decided they are "big kids" and wanted to ride the big rides.  She was tall enough with an adult, and rode the big roller coasters (PowderKeg), the log ride, another roller coaster, etc.  You name it, they rode it.  It was great fun for our family!

Recent Pictures

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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.