H4H Update

Tessa had a wonderful mapping appointment at Hearts for Hearing today!  Everything seems to be in working order with her Right Cochlear Implant and not impacted by her head trauma from the beginning of the summer.  This was great news considering how much Tessa loves her ears!

Such a fabulous crew at Hearts for Hearing!

So thankful for their continuous support and encouragement!!

Listening is hard work...but she's still grinning

 Tessa was shaking her maraca while she was listening to her beeps :)

Tessa's limited motor control makes it a little more difficult for her to show us effective responses to the sounds she hears.  We are always coming up with new things to try that are motivating for her!  During these videos they are playing tones directly into her Cochlear Implants and we are encouraging her to hit the tambourine when she hears them.  This whole process allows them to make adjustments and program her hearing levels accordingly.

Hearts for Hearing Mapping Appt Video

https://youtu.be/jLp0mqhOHcY

Hearts for Hearing Mapping Video

https://youtu.be/0Yf0eqV6Pfg

H4H Listening to her beeps :) 

https://youtu.be/vPfqy48qKtQ

And for old times sake...here's one of Ms. Tami and Tessa during a therapy session from 10.2.2012 -almost 3 years ago!

https://www.youtube.com/watch?v=Xzpvp6TUIl0

~Whitney

Our Growing Girl!

This little girl has had the greatest bunch of giggles for us here lately ~ her joy just radiates!!

She's growing up and changing so much!!

She always reminds me of what's important!

~Whitney

Friday Fierceness

Last Friday Tessa had a mapping appointment at Hearts for Hearing!

She was showing off her mad listening skills ;)

Later that evening Parker and I had an intense game of Foosball.

This is his fierce-face!

Tessa decided to join in on the funny fierceness as well ;)

~Whitney

No CI Surgery in 2013!

Tessa had a mapping appointment at Hearts for Hearing yesterday and we went together as a family.  That isn't a strange or rare occurrence, but what is different, is that for the last two years around this time, we've been preparing for Cochlear Implant surgeries.  

Tessa was implanted on the right on June 3rd in 2011 and on the left on June 5th in 2012.  Tessa has now spent more years of her life hearing, than not hearing.  Waiting in the waiting room yesterday, just watching her play with her daddy and brother, I was incredibly thankful for the gift of sound.  I can't even imagine how different our lives would look today without Tessa embracing life through sound.  Can't imagine it.    

Surgeries were always stressful and change was definitely hard, but the journey has been amazing and I just sit in awe of where we are today.

Life with a 5 and 3 year old is such a blast!  Summer has begun and without an impending surgery...we are making the best of every minute ~ playing, growing and listening!!! :)

~Whitney

Working Hard!

Here's Tessa working hard at auditory/verbal therapy last week.  

I don't think I've ever seen her lift a toy with her arms like this!  It was so cool to see and she was doing it all by following verbal commands!

Good job Miss Tessa!  I'm so proud of you!!

~Whitney

Booth Testing Videos

Responding like a champ!!!

Tessa apparently doesn't have a very good poker face! lol

~Whitney

Best Big Brother

Parker held Tessa's hand the whole way to therapy on Tuesday so she wouldn't cry.  It was just me and the kids that evening since Darin had parent/teacher conferences at school.  Parker wanted to make sure I knew he was going to do everything he could to help me, because he wanted to help make me and sister happy.

He's so young to be such a little protector!

When we pulled up in the parking lot Parker said "you know Mommy, Tessa shouldn't have to work all the time, they really should just let her play" ;)

He definitely helped his sister play a little during her Auditory/Verbal therapy session.  Everything is always a little brighter and a little more fun when big brother is around!

And then some entertainment for the car ride home...

~Whitney

So Impressed!

Miss Tessa never ceases to amaze me.  She had the most wonderful therapy session at Hearts for Hearing yesterday and I am just so proud of her.  The challenge with Tessa sometimes, is keeping her attention; she is so much LESS interested in objects and instructions than she is in people and playful interactions.  Which really, would probably hold true for most 2 year olds ;)

It was very very exciting to see her working so hard and staying so attentive for the entire hour we were at therapy.  We have moved forward with 2-step-commands and she is doing beautifully.  Before, we would simply ask her to pick up or point to the horse, now we are not only asking her to pick it up, but we are also asking her to put it in the bye-bye bucket.  With the way these videos go, you would think she's been following 2-step-commands forever ;)

I didn't get it on video, but my favorite part of therapy today was when Ms. Tami asked Tessa to give me a plate, a cup, and then all the food on her plate.  She picked up each and every item, one by one, first with her right hand, passed them to her left hand and handed them to me.  It was so beautiful.  Each and every time she picked up the appropriate item and shared them all with me.  It was so so great!

In this first video, it took me a minute to realize that Tessa couldn't reach the horse.  It was a little too far back on the table, and yet she was still trying so hard.  She vocalizes at one point and later I wondered if she was trying to ask for us to move it closer so she could get it...

The improvements in Tessa's fine motor skills are drastic from a year ago.  But still to watch how hard she works to perform these tasks is just incredible to me.

I absolutely love the expression she gives when it's time to pick up the lettuce.  This weird, flimsy, rubbery little object is not Tessa's favorite, and I love that she takes the time to show her complete disgust with the instruction she's been given!

....that's my girl! ;)

~Whitney

Hearts for Hearing

Hearts for Hearing has been in our lives for almost two full years now.  They recently redesigned their logo and website and are sharing their mission of Hope! They have dedicated a place on their new site to "Stories of Hope".  Giving parents an opportunity to share their own personal story and experiences at Hearts for Hearing. 

http://www.heartsforhearing.org/

I was excited to take this opportunity to reflect on just how much this organization, and the amazing people that work there, have done for our family.  On Tuesday at therapy, we donated Tessa's tiny pink hearing aids   back to Hearts.  It was a little emotional.  Those hearing aids symbolize so many things for us: the 'original hope' that we gained in the very beginning of our journey with Tessa, our first experience down this path of many-accessories for her, the new and necessary idea of taking a day at a time, and marveling at God's provisions every moment along the way.  Come to find out, there was a baby that was just diagnosed that afternoon that was going to be able to use Tessa's loaner aids.  And not only that, but any time a child's aids are down or having to be worked on, loaners allow Hearts the ability to make sure their lives aren't disrupted during that time.

We are thrilled to look back and see how far we've come.  It is very exciting to see the ways that you can make, what could feel like a devastating time in your lives, an opportunity to pay it forward with a grateful heart from having walked that path before.    

http://dev.heartsforhearing.org/stories/

Our Story:

Hearts for Hearing is a place of hope, and for our family, that hope has created many joyful celebrations!

Tessa was born on April 8, 2010 at 38 weeks weighing just 4 lbs 15 oz.  We were told she was healthy, just small, and that everything appeared normal.  On July 30, 2010, at just 3 ½ months old, Tessa was hospitalized and a series of events lead us to learn of her Congenital CMV diagnosis.  I didn’t know I had CMV while I was pregnant with Tessa, but the virus ended up attacking her tiny little body before she was even born.  During our hospital stay, many discoveries were made: Tessa had severe brain damage on her cerebral cortex and some on her visual cortex which had resulted in Epilepsy, Cerebral Palsy (CP) and Cortical Visual Impairment (CVI). We were also told the virus had potentially caused damage to her eyes and ears, as well.  On August 3^rd Tessa failed a follow-up hearing screening (she had passed her newborn one), and on August 10^th, we had her very first appointment at Hearts for Hearing to determine a further diagnosis of bilateral, profound, sensorineural hearing loss.

 

In a matter of 2 weeks, our lives had changed in ways we could have never imagined.  We knew the Lord had a very special plan for our daughter and the days to come would require our faith in His immeasurable grace and provision of strength.  If there is anything we have learned; it’s that this journey was never intended to be traveled alone.  I didn’t realize that, in those initial days of diagnosis, but Hearts for Hearing did…and they began their journey with us.  It takes an incredible level of compassion and understanding to make a transition like this, so seamless.  And it takes a very special group of people to join in these intensely fragile journeys.  The umbrella of this kind of organization is hope…and it is carried out in the most beautiful way.  Hearts for Hearing was such a soft place to fall, and I am so grateful they were the first ones to rally around us after our hospital stay.  They have definitely helped define our journey of hope. 

By August 17^th, just 14 days after Tessa’s failed hearing test, she received the cutest little pair of pink hearing aids.  We have been participating in Auditory Verbal therapy since August of 2010; Tessa received her 1^st cochlear implant on the right side in June of 2011, and she received her second CI in June of 2012.  There has been so much joy on this path of hope and hearing.

 

We believe the Lord is sovereign in our lives and works all things together for good.  Hearts for Hearing has been an answer to our prayers for a time in our lives when we barely even knew what to pray.  “Thank you” would never be enough to express the way we feel in our hearts towards this incredible organization, but I know the amazing changes in Tessa’s life are evidence of the gift they have given to our family.  In almost 2 years, we have celebrated more than we could have ever imagined and our sweetest of celebrations have been within the walls and among the staff of Hearts for Hearing.  

The BynumFour

Darin, Whitney, Parker & Tessa Bynum
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

Too fun!
I also found a picture of Tessa from last September when they did a little photo shoot of some of the kids attend Hearts for Hearing:
http://dev.heartsforhearing.org/audiology/diagnostic/fm-fitting/

~Whitney

Activation Day!

Activation Day 1 went great!  It is always so amazing to me to watch Tessa work so hard and be so patient! It never hurts when the world is revolving around her for the moment either ;)

One thing that is super different that I hadn't even thought about:  before, when Tessa's right CI would fall off or she would take it off...she would have no access to sound.  The most challenging moments of this were when she would pull her CI off and start chewing on it...our initial reaction is still to say "Tessa Rayne, no ma'am!" ...and of course she hears nothing..and our verbal discipline turns quickly into an "Ugh!" and then most of the time...laughter.  I can see her utilizing this Ears-Off-Can't-Hear-You tactic well into her future ;).  But anyway, for reasons other than her just hearing our verbal reprimands...it is very cool now, that even if one of her CIs is off, there is likely at least one in tact and so she barely misses a beat!  And you can already tell how much more she is taking in!

The coolest moment of my evening:  Tessa took a good nap on the way home after Activation and we took her ears off and let her sleep a bit more once we got home ~ she was pooped!  When she woke up I put her ears back on and carried her in her room to change her diaper.  She was so calm and grinning from ear to ear.  I was just talking to her and laid her down on her changing table and she started the sweetest bunch of soft little giggles to every word I said.  I would say a few words and she would giggle...almost right at her turn in the conversation.  I just stood there for a good 5 minutes, just talking to her and watching her smiling and listening to her precious sweet little giggles to every word I said.  I'll never forget it.  It was so clear that her world was already sounding very different to her...and last night, she was loving it!

Most of the videos we got were from when Tessa's new CI on the left was hooked up to detect tones being played to her.  As she responds to the tones, they are able to map her new processor.  It was incredible to see her responses to this new sound for the very first time!

  

A huge thanks to the greatest of people at Hearts for Hearing!  We have been through a lot over the last 2 years...and we are so blessed to have had them so involved in our journey!

~Whitney

Activation Day!

It's activation day today and we are really excited!  Tessa has healed up very nicely from surgery and we are ready to get her left CI turned on today and start helping Tessa get adjusted to life with 2 CIs.

It's silly, but I must admit, I have moments where I would love to be done with headbands...but since it is the most realistic solution for Tessa to be able to function with her CIs on...I learn to deal ;)  The sweet girl we found on Etsy last year, came through for us again this year!  We got Tessa's package of 18 headbands, with left and right CI holders sewn on!  Since they are an essential accessory...we are thankful for the fun fashion element too!

We're hoping to get lots of pictures and videos to help capture today.  There is no way to know exactly how the left activation will affect Miss Tessa, but more than anything, we pray that she feels secure and comfortable with the way life will begin to change for her.

It's been really fun over the last few weeks as people have been asking how Tessa's surgery went and how she's been doing.  Several times in those conversations I've had moments where I just stop and think, 'it's kind of a miracle, that she is deaf...but she hears now'!  So much of our lives is about adjusting, constantly finding a new normal, and rolling with the punches...I wouldn't trade those moments where I can stop and realize God's constant provision for Tessa and our family.  I pray that I am always reminded of these miracles along the way...and that I always take the time to stop and praise the Lord for all the ways He shows Himself sovereign in our lives!

So, here's to witnessing another miracle today!  It's a good day :)

~Whitney

UCO Hearing Impaired Preschool

Darin and I had the opportunity to take Tessa to visit the UCO Hearing Impaired Preschool in Edmond last Friday morning and the experience was amazing!!  Even though Tessa just turned 2 in April, decisions for her transition into the school system at 3 are starting now.  We have lots of things to consider and even more to pray about! Since this program includes Speech-Language Pathology Graduate Assistants from UCO*, the ratio of teachers to students is great.  Both the director and the teacher of the preschool are amazing and we couldn't have been happier with the experience.

Between now and when Tessa turns 3, we can be included in the UCO program on Friday mornings from 9:00-11:00.  This is the time for the SoonerStart kids and parents to get a glimpse at what it would be like to attend Preschool here.  The only downside to the Preschool for us at this time, is distance.  It takes a minimum of 45 minutes from our house to the school.

Communication is such a big focus for us right now.  We want to make sure Tessa has the tools she needs to communicate with her caregivers...both now and when she transitions into school.  We are still gathering all of the information, but it does sound like there is a way to incorporate the UCO Preschool with Public School when Tessa turns 3.  The Preschool would only be addressing Speech for Tessa, so we would still need to make sure we were providing her with the other therapies she needs (PT, OT, etc.)  If we could get Tessa in a program for a year or two to really help build the foundation of communication for her...it would be incredible.  It would be such a gift to give our little girl all the opportunity in the world to learn to express herself!

These types of decisions are so easy and so incredibly difficult at the same time.  We are always wanting to make sure life is well-rounded...not only for Tessa but of course for Parker too.  At this point it is hard to imagine 1 1/2 hours on the road to get Tessa to and from Preschool...but when you consider how life-changing this scenario could be for her...a year or two of it seems worth every minute and every mile.  At the same time, being a working mother, and considering traffic and how the time I spend on the road would be time I'm sacrificing with Parker....the decision becomes very challenging for me.

Thus....we have Lots of praying to do.  We trust that if this is the right opportunity for Tessa, that the Lord will continue to open the doors in that direction for us.  Our job is to stay faithfully in His word and His will so when the time comes, His direction for our family is very clear! 

Here's a look at our visit :)

Tessa was just taking it all in and made some new friends too!

This was by far her favorite!

This sweet little friend wanted to join the fun!

~Whitney

*I found this information this morning, it was interesting to read how the Graduate Assistants are involved in the Preschool Program at UCO:

http://www.uco.edu/ceps/files/sps/slp-ga-application.pdf

UCO Hearing Impaired Preschool Classroom GA: (typically four 10-hour per week GA positions)
Graduate assistants in the UCO Hearing Impaired Preschool are supported each semester through an annual contract with
Department of Rehabilitative Services/Oklahoma School for the Deaf. These GAs are engaged in assisting the Teacher of the
Hearing Impaired, Ms. Melanie Coldren, who is employed by DRS/OSD. Preschool GAs must have at least beginner-level
skills in Signing Exact English. The Preschool serves 10-20 children from a number of school districts in and around the
metropolitan area who are hearing impaired and may present other challenging conditions as well. The schedule for the
Preschool follows the calendar for the Edmond Public Schools. For classroom GAs, a proportion of the assigned hours in the
Preschool will translate into a specified number of clock hours that are counted toward practicum requirements.
The duties of these GAs include at least the following:
1. Assisting with the daily classroom management activities to include
a. greeting children in arriving at and leaving the Preschool;
b. preparing and serving snacks;
c. accompanying children to restroom, playground;
d. assisting with classroom and child clean up.
2. Developing teaching materials and activities for group sessions.
3. Providing ongoing language stimulation.
4. Assisting with hearing evaluations, tympanograms, and auditory trainers