Born For Glory.

Dave preached a sermon on Sunday.

About a blind man.

And Jesus.

And it became about Ashlyn.

And my heart in caring for a little girl with special needs.

And was still about Jesus.

Dave has a gift in that.

God uses him to dissect texts I've read over hundreds of times

and breathe new life into them.

But it's always about Jesus.

Why was Ashlyn born deaf?

So God can be glorified in her life.

Period.

Why was your son born with autism?

Or your daughter with Down Syndrome?

So God can be glorified.

Why did He give them to YOU?

So God can be glorified in your parenting.

We make it so complicated.

And it's easy to complicate.

We mourn.

We question.

We turn our backs on God.

We blame.

Hear this.

Christians should not live burdened by their child with special needs.

We should live looking for chances for God to be honored and elevated in our situation.

Sure, there are hard days.

Exhausting days.

And it's perfectly acceptable to be exhausted.

But let's also be joyful in our purposeful lives.

He gave us our sweet little girl.

That He may be made known through imperfect ears.

And imperfect lives.

And imperfect, overwhelmed parenting.

That His works might be displayed.

Ashlyn and Chloe

[youtube http://www.youtube.com/watch?v=f12u7RLIFmE]

Kim sent me this video last week.

She was kind enough to babysit the girls while Dave and I were out for my birthday dinner.

And I saw it fit to post.

For a few reasons.

The first anniversary of Ashlyn's cochlear implant activation is later this month.

I want to remember the tremendous progress she's made.

And I want a marker of the progress to come.

I want to look back a year from now and feel the way I do when I watch her today.

As I see her answer questions and speak more clearly.

As she interacts with others without a need for my interpretive skills.

I love her silly jokes.

I love her personality.

I even love her sass when she talks back.

Last year, I remember feeling doubt and fear that we were too late.

And while her speech may never be exactly perfect.

I think we're going to be just fine.

Activation Day

Yesterday was a big, huge, giant day for a certain little girl in the Johnson house.

Ashlyn's "new ear" was turned on.

We'd been watching lots of cochlear implant activation videos on YouTube in anticipation.

Don't be jealous of our exciting Friday nights.

Many of the more popular ones are pretty amazing.

[vimeo http://www.vimeo.com/30797962 w=500&h=706]

I knew in my heart Ashlyn's experience would be different.

I didn't imagine her being shocked or surprised.

Or overwhelmed and crying.

And she wasn't.

Because she's always had some hearing.

Just not enough.

And, although it was a big day.

It was also a simple day.

A proud little girl who can identify the numbers 4 and 2.

Who's adjusting very well to hearing sounds in a new way.

A good God who has a great plan.

And two very thankful parents.

Post Op Report

Our little patient is recovering quite nicely.

My goal since surgery has been to keep her looking like Erykah Badu as long as possible.

I'm a little obsessed with the head dressing.

So far, so good.

 

And you know.

There's really not much to report.

Surgery went well. No complications.

 

She spent some time resting on the couch when we got home yesterday.

We gave her a dose of antibiotics around dinnertime.

She had some water and a spoonful of Jell-o and then asked for her bed.

Where she slept until about 10 pm.

She then came into our bed and slept there until morning.

 

She has been seemingly pain-free since the surgery yesterday.

Her doctors advised to give over the counter Tylenol if she seems irritable.

But we haven't had to do that yet.

 

Dave had a golf trip planned months before her surgery was set.

He was ready to call it off but I encouraged him to go.

And we both felt comfortable enough with him leaving this morning.

Which means things are good. Really good.

 

She has a follow up appointment at UCSF next Friday.

At that time we will get her activation date.

Likely to be sometime around mid-October.

That's when all the fun stuff starts!

 

Thank you for your prayers, texts, phone calls, Facebook messages.

Those that came to the hospital yesterday.

Those that took care of Kayla.

Those that broke into our house and left us food.

The beautiful flowers and balloons that arrived a few minutes ago.

 

We are grateful.

Truly.

Overwhelmed.

We have some pretty amazing family and friends.

 

And we have an even more amazing God.

We are so thankful that He kept her safe.

And even more excited at how He will use her in the future.

 

She is such a gift.

Tomorrow

You know.

As I blog the life of my family, it's tempting to only tell you the good stuff.

The things that I am excited to share.

The happy parts of our story.

 

But that is a disservice.

To me.

To you.

To my family.

To my Jesus.

 

Tomorrow morning we will drive our little girl up to San Francisco.

And hand her over to a surgeon that we've only met four times.

And that surgeon will cut behind her ear and drill into her skull by the time most of you are eating breakfast.

Dramatic, I know.

But it's our reality today.

 

And I will be honest to say.

I'm anxious.

I know that she is God's child.

On loan to us for a time.

But we still have to make decisions on her behalf.

And we do our best.

But we still doubt.

 

Please hear me.

We are thrilled.  And excited for the technology that is available to us.

Thankful for excellent insurance that pays for the entire procedure.

But anxious at the process that gets us there.

 

Will you pray with us?

For her surgeon.

For the anesthesiologist.

The nurses.

All that come in contact with her tomorrow.

 

Would you pray for Ashlyn?

That she would understand this is for her good.

That we are trying to do what we think will be best for her.

That she would feel minimal, if no pain.

For a speedy recovery.

And that the device would work well for her.

That she would benefit from it.

 

We are incredibly grateful for our family and friends.

Especially now.

Thank you.

Cochlear Implant Journey, Part 1-B & Deaf Speech

We had another hearing evaluation at UCSF this morning.

And can I just say that this may be the most beautiful place on the planet?  Even from a freeway.

I love the Bay Area.  There is a reason it costs $5,678/sq. ft. to live here.

Back to the evaluation.

Surprise!  She's still deaf.

The UCSF audiograms taken last week and this morning matched her 3 previous audiograms from her regular audiologist.

This provided the necessary confirmation that she is a candidate for implantation in her right ear.

The UCSF surgeon now needs to review her CT scan and MRI that were taken at the time of her initial diagnosis in 2009.

We also learned that there is a slight increase risk of contracting meningitis in cochlear implant patients.

So she'll need a meningitis booster prior to surgery.

We also have to decide which device to implant.

We have two options - Medel or Cochlear.

Lots more research in our near future for a surgery that will likely take place in late June.

About six months after implantation,  the audiologist anticipates we'll see significant improvement in her speech.

With the implant, she'll gain access to the "soft sounds" that she is not getting with her hearing aids.

"sh"

"th"

"es"

"ef"

All the good stuff.

Speaking of speaking.

Here's a little video I took of Ashlyn on Sunday morning.

This will give you an idea of where's she at from intelligibility standpoint.

And if you're not me, Dave, Kayla or Kobi

you'll probably have no clue what she's saying.

She's telling my parents to come home from their vacation in Florida to take her to the beach tomorrow.

 

[vimeo 21993206 w=400 h=710]

Excuse the bed head and Thomas the Train in Japanese in the background.

And surprise!  She's still on her bike.

Ashlyn's Cochlear Implant Journey - Part 1

Ashlyn had her initial assessment with the UC San Francisco Cochlear Implant Team on Monday.

Just some preliminary hearing testing.

Three hours worth, actually.

It went well.

Our girl rocks the sound booth.

She loves playing games.

And matching colors and stacking things.

She and the booth are good friends.

And UCSF has Mickey and Donald figurines that light up when she identifies a sound correctly.

Now to me, they are creepy.  Nightmare-inducing, later-in-life-therapy-requiring creepy.

But she LOVES them.

Her regular audiologist's office has a duck and a turtle.

Equally creepy.

She's been over the duck and the turtle for quite some time.

Let's just say she would have spent the night in the UCSF booth had I let her.

The testing confirmed her severe to profound loss on the right side.

Which is the side they will implant.

Because she still has a significant amount of usable hearing in her left ear,

the specialists recommend continuing with the hearing aid on her left side.

Surgery date will not be set until after all the preliminary screening/testing is complete.

We have another appointment next week.

Thanks for praying for and checking in with us.

We love and appreciate it more than you know.

Cochlear Implants for our Little Girl

Most of you know our little girl is deaf.

She wasn't born deaf.

We think around age 16 months, she began to develop a progressive loss that occurred over an unknown period of time.

In April of 2009 she was diagnosed with Enlarged Vestibular Aqueduct Syndrome.

This caused a severe to profound loss in her right ear and a moderate to severe loss in her left ear.

She's been wearing very powerful, digital hearing aids since her diagnosis.

And to date, this hearing loss has remained stable.

Most kids with EVAS eventually lose all hearing and we expect this will happen with Ashlyn.

She turns 4 next month.

And honestly, we've hit a crossroads.

Due to the nature of her hearing loss, treatment has been tricky.  Always borderline.

We did not want to rush to any decisions.

We know that once she's implanted, she loses ALL of what little natural residual hearing that she has.

We also realize that with speech and language development, time is of the essence.

And we've prayerfully considered each step in her education and treatment.

We recognize that in the deaf community, this is a HUGE deal.

There is great controversy.

It is a very emotional issue.  Understandably.

We want to be sensitive.  And struggle with what could be viewed as us selfishly removing her from that community.

Or ever making her feel like there was something "wrong" with her that we had to correct.

On the other hand, we struggle with withholding amazing technology that will likely make life easier for her.

We're not trying to "fix" a problem.  We do not think there is anything "wrong" with her.

We think God made her beautiful and perfect and the way He intended her to be.

And just like I wear glasses and contacts to help my eyesight,

Ashlyn will wear Cochlear Implants to replicate hearing better than her current hearing aids can amplify it.

She has her initial screening at U.C. San Francisco at the end of this month.

Please be in prayer for us during this process.

We are excited and anxious.  And confident that this is what's best for our daughter and our family.

And you'll probably be "hearing" lots about it... ;)

The Trouble About Being Deaf

Timeless.  And written by Ashlyn's great, GREAT grandmother 35 years ago.

Head Start Reunion BBQ and Mountain Dew Cupcakes

Let me start  by saying that making Mountain Dew cupcakes for a kid's dinner BBQ may have been the worst idea in the history of all mankind.  But they were cute and easy.  And colorful and fun.  And perfect for kids just before bedtime, right?

Kayla's 7th birthday party is tomorrow so I have lots on the brain.  And protecting little children from glucose-packed, caffeinated crumpets is clearly not one of them.  Lots of mommies were swearing at me later, I'm sure.

The BBQ was fun.  It was great to connect with Ashlyn's former classmates and hear about their plans for the future.  We were excited to learn that some will be moving up soon and joining Ashlyn with Teacher Jackie.

Here is Ashy with darling Teacher Angela.  Her first love.  She was shy.

And very caffeinated.

Sorry, again reunion mommies.  Here's the recipe so you can get me back next year.  Change the icing color.  I'll never know.

Duncan Hines Yellow Cake Mix, 12 oz. Mountain Dew and an additional 1/4-1/2 cup Mountain Dew for brushing on tops.

For the frosting: 2 sticks butter (softened), 2/3 cup Mountain Dew, 1/4 tsp vanilla extract, 1/4 tsp lemon extract and 7 cups powdered sugar

Preheat over to 350.  Combine cake mix and Mountain Dew.  Mix on low speed for 30 seconds, scrape sides of bowl and beat on medium for 2 minutes.  Fill cups 2/3 full and bake about 15 minutes or until tops spring back when lightly touched.  Remove pans from oven and poke holes in warm cupcakes with toothpicks.  Brush tops lightly with Mountain Dew.  Remove cupcakes from pan and allow to cool on rack.

In the bowl of an electric mixer, combine softened butter, Mountain Dew and extracts.  Beat on medium speed until well blended.  Add powdered sugar until frosting reaches desired consistency.  Using gel food coloring, color half the frosting yellow and half green.  Place in a piping bag side by side and pipe onto cooled cupcakes.

P.S. I don't even know what a side by side piping bag is, never mind where to find one so my frosting was ghetto improv.  Go here for the real deal.

Ashlyn's Progress Report

made me laugh.  Especially some of the progress summaries.

• "Ashlyn is able to answer several who and what questions.  She is able to answer "What will you do when you get home?"  Her answer: "Swiss, Little Burrito."

OK, so...  Ashlyn, like her big sister, is quite fond of Swiss Family Robinson.  She is equally fond of El Monterey frozen, microwavable bean and cheese burritos.  Ashlyn gets out of school @ 1:45.  Kayla does not finish until 2:35 which on certain days, leaves a hellacious pre-nap time gap.  Swiss and burritos help.  And now it's officially documented.

• "Ashlyn has not yet reported that her hearing aids are not working.  However, she was able to report in great detail about putting her aids in the microwave and what happened to them."

Also, documented.  Fabulous.

• "Ashlyn has learned all the names of her classmates and the adults that work with her.  She uses the following sentences in class: I want more paper towel, please.  I want one more frog.  Ashlyn need pee (funny how she never says that one at home), I want pour more water, Me swim. Dad, Papa, Ashlyn swim.  Mommy is here.  Sharbel is in Israel."

Sharbel, her little classmate and friend, has been visiting family in Israel for well over a month now.  Every morning during attendance they remind her that Sharbel is in Israel.  She now thinks that every plane she sees is going to Israel.  And every person that is away on vacation is in Israel.  Including Nan and Pops who are in North Carolina.

Hearing Aid Flambe

Monday morning.  We're on our way out the door to take Kayla to school when I notice the little one's hearing aids are missing.  I ask her where they are and she points to the kitchen.  Milestone alert (that only parents of deaf kids care about): she's recently mastered the glorious ability of being able to point out where she has hidden or hurled them.  Of great benefit to me 99.9% of the time.  This day, not so much.

I smell them before I see them (never a good sign), turn the corner and find them in all their glory.  INSIDE the microwave, one sparkly pink flame ball rotating ever so gracefully on the glass tray; the other, about to spontaneously combust in the far left corner.  Yes, our darling daughter cooked her "ears."

Last night, Dave asked her where they were and she said "Broken!  Hot!"  She's lucky she is cute.  And that we bought the insurance.

Teacher's Pet

I'm not gonna lie.  When Ashlyn's teacher sent me an email with "today" as the subject, I got a little nauseous.  My first thought was that she smuggled a pomegranate into school and wailed on an unsuspecting classmate like she did to her sister earlier this week.

But I was pleasantly surprised...  And got a little misty-eyed myself after reading these precious words from her sweet Teacher Angela, who we absolutely adore.  She and Ashlyn share the same birthday.

"Hi Jessica and Dave,

I didn't get an opportunity to say a proper goodbye or tell you about Ashlyn's day.  It was so exciting and now makes me a little misty-eyed when I reflect on it.  Ashlyn loved connecting these bunnies at our table activity.  She played peek-a-boo several times with them.  She has been affectionate a little more lately with me and often runs up behind me giving me a hug.  I view that as a sign that she loves school and what we all represent here.  During circle time, she told us where the child was by saying "Sam a home" which was her way of saying "Sam at home" or "Mylon a speech Nikki" which means "Mylon at speech Nikki."  She knew who had what prop and would say the name of the child or would immediately cue in when it was her time to act.  For example, we counted green animals, then each child got an animal.  When I asked for an animal, she said the name of the child who had that animal or raised her animal to be dropped in the box.  Snack time was precious.  Today she ran through all the words and sentence structures she knows.  Today, she said/signed together: 1-Angela, I want more round crackers; 2-I want yellow water (I gave her the response of "Oh, Ashlyn  you want water in a yellow cup, alright"); and 3-Angela, I want more water in cup yellow.  We played outside and when it was time to come in she ran to the rings and walked back to the classroom (no more negotiating or playing her game).  During story time, she participated in Brown Bear, Brown Bear and when her animal was read in the book, she placed it on the board.  It's so cool to see her so excited about learning and using what she knows and has learned.  You guys are doing a great job of supporting her language, listening, and speech development.

Enjoy your weekend and see you on Monday,

Angela"

Ashy and her Ears

How many popsicles does a TWO year old with a DOUBLE ear infection get?  You guessed it!

Her two ears have taken us on quite a journey...  At birth, Ashlyn passed the newborn hearing screening with flying colors and seemed to respond normally to sounds as an infant.  By age 2 she was not saying much.  "Mama" and "Momo" (Elmo) were her only two words.  We chalked it up to a chatty older sister who took care of everything before she even asked and assumed she was just a late bloomer.

At her 2 year well-baby check-up, her pediatrician recommended speech therapy.  The process started with a routine hearing exam.  To our surprise, she failed the same test she passed at birth and was diagnosed with a severe loss on her right side and moderate/severe loss on her left.  Further testing revealed that she has Enlarged Vestibular Aqueduct Syndrome (EVAS for short, thank goodness).  Basically, the tubes that transmit sound from her ears to her brain are slightly larger than they should be.  This causes a progressive hearing loss (which is why she heard normally at birth) and there is no known cure, surgical or otherwise.  We are unsure exactly when she developed her hearing loss or how bad it will get.

The silver linings to this cloud are many.  Technology is advancing so rapidly that it's hard to keep up and we live 20 miles away from where much of it is happening.  Digital hearing aids are the best they've ever been and she is responding wonderfully to hers (and they are pink and her ear molds are sparkly and SUPER cute).  Also, her hearing loss seems to have leveled off for now.  She was screened again last November and it was the same as when she was originally diagnosed and we have another one scheduled for the end of the month.

We also have the option of cochlear implants if her hearing declines any further.  The downside to cochlear implant surgery is that it destroys all residual hearing so we are praying that she maintains what hearing she has left and that she continues to do well with the amplification that her hearing aids provide.

She is in a total communication program learning speech and sign language two days/week and has individual therapy twice a week.  "Signing Time with Alex and Leah" has become a family anthem of sorts.  Ashlyn LOVES Leah and I think Dave has a secret crush on Rachel but that's a blog post for another day... ;)

Less than a year ago she said only a handful of words and now she has quite a vocabulary (both speech and sign).  She is still pretty difficult to understand for anyone outside of our immediate family but is steadily improving.  We are so proud of her and the progress she has made and we are trying to be patient as she is learning.

She is only two, after all...

"In this world you will have trouble, but take heart for I (Jesus) have overcome the world..."  ~John 16:33