March Madness?

Greetings!

Since the last post, things have definitely moved quickly!  After meeting with our ENT to review Izzy's CT scan, we learned that Izzy, in fact, has bilateral EVAs and cochlea hypoplasia, which means her cochlea wasn't fully formed in utero.  Well, that certainly explains why she has hearing loss!  We are still waiting on genetic testing, but we have some ideas of what Izzy's disorder could be.  According to our doctors, Izzy's hearing loss is progressive.  This information gave us a plan.

Another appointment was set for a cochlear implant "work up" with a new ENT who performs CI surgeries and the audiology department at Vandy.  While we patiently waited for this appointment, a local non-profit held a conference nearby.  Randy and I attended, excited to hear leading professionals from Vanderbilt discuss new technology with CIs and local SLPs discuss best practices with CI patients.  The best part?  Our surgeon was a presenter!

During break, before his presentation on single-sided deafness and implantation, I just had to introduce myself to gauge my instincts about this man who could possibly operate on my child.  I said hello, told him who I was, and mentioned Izzy.  His response was all I needed to calm my nerves.  He says, "Oh, yes.  Bilateral EVAs and two turns."  We had not even met with this man, yet he already knew my daughter's name and her case.  Thank you, Jesus.  His next question:  "Did you decide which brand?"  (Holy smokes.  What a decision!  Needless to say, I spend countless hours researching the three brands of CIs.)

The conference was reassuring in that the CI road we had chosen was the right choice.  While some children may not have those wonderful success stories that we see in videos shared on social media, Izzy has the language foundation, good habits, and the willing parents (I have to give Randy and me some props here.) to ensure her likely success. We saw multiple charts, plenty of data.  We heard exciting new techniques and progressive research.  We saw amazing success stories of children who certainly defeated the odds.  We got all the good feels that day.  And I won't lie.  I shed a few tears.  Happy tears.

Our next trip to Vandy wasn't as "magical" as the previous visits. Someone dropped the ball and we had not received our candidate packet, nor had we been scheduled for audiology.  While the appointment was a little unorganized, we were able to get everything done.  Our surgeon explained things, asked for questions.  I feel like we had some good ones, but I couldn't leave without knowing how experienced he was with this type of surgery.  Rest assured, he has performed over 200 CI surgeries.  Ok, I'm good.  The audiologist completed all testing necessary to ensure we would have no problems with insurance.  She said we absolutely qualified, and Izzy got to pick out colors.  Pink, of course.

So, we are all set. Wait for insurance approval (got it within a week with no problems!) and schedule a date (March 8th).

Then, there is school.  Somebody tell me why IEP meetings have to be so hard, please.  I'm an educator.  I have some professional knowledge of these critical issues and laws concerning students with disabilities, but still, as a parent, I feel so terribly uninformed.  Sure, they hand you a little blue book of your rights, but things already seem finalized or something.  I don't really know how to describe these meetings, but I know that I don't care for them.  Luckily, because of an awesome preschool, I knew that Izzy needed a Roger system.  I already had the list of devices with prices from our audiologist.  This helped speed things along.  Since then, the IEP team has met again.  Thanks to some amazing contacts at Vanderbilt and their sharing educational information with me, I passed out handouts about troubleshooting, static electricity, and tips for teachers.  My hope is that Izzy gets exactly what she needs in the classroom.  As a mom, of course I want to be her advocate.  I've said before that no one will stand up for my child more than I, but I also have to learn to let go just a little.  I've become overwhelmed with thinking ahead.  I'm researching reading strategies.  I'm researching comprehension interventions.  I'm researching acoustics in the classroom environment and wondering if everyone should turn off all the lights and electronic devices to decrease background noise.  Clearly, I need to chill. So, chill I must.  And trust.  I must trust. Given our particular journey, excuse me if I have trouble with trust.

So, here we are.  In one week, we will be in Nashville, probably at the American Girl Doll Store, preparing for a really big and important day.  Quite possibly this will be one of the most important days of Izzy's life.  I know I certainly feel the importance.  Obviously, the questions of whether this is the right thing for her, if she will adjust well, if she have any problems during or after surgery are constantly circling in my mind, but as I said, I have to learn to let go just a little.  And trust.  Oh, the job of mommy!

Prayers, good vibes, and positive thoughts are sought for us to survive this week with sanity, clarity, and a good bill of health.  The next update will feature info about new hardware and software, and how well our bionic child is adjusting.

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Long time, no update. But now, here's the scoop.

Hi, friends.  I know I haven't added anything to this blog in awhile.  Frankly, I didn't think I needed to.  When we needed the help of our friends and family - and perfect strangers - this blog was the best way to keep everyone informed of our story and our progress.  Plus, everyone was able to see Izzy's stylish choice of hearing aids once she received them.  Randy and I are still in awe of how great of a response we received, and we are still thankful for the generosity of so many.

Since receiving her hearing aids, Izzy has made incredible progress.  She has never had an issue wearing her aids.  She even asks for them.  Now, she is almost able to put them in by herself, and she is learning how to care for them on her own.  When other children ask what they are, Izzy quickly, and almost proudly replies, "Those are my hearing aids."  She has no shame.  Her biggest improvements have come with her speech.  Izzy has received speech both in school and through private therapy.  While she can still be somewhat difficult to understand during conversations, when focusing on specific sounds, she nails them.  Her brain is beginning to differentiate among the sounds that she had thought were the same, and she sometimes corrects herself.  We are so proud of her!

We had new tubes and an adenoidectomy since getting the hearing aids, because Izzy still develops ear infections and she retains fluid, specifically on her right side, which is the ear with the greatest hearing loss.  Izzy bounced back from this procedure very quickly, and things seemed to be going very well.

So, when things are going well, how can we complain?  Why would we question if there is something more we can do?  We were seeing progress.  Feedback from her teachers and doctors suggested that we were doing exactly what Izzy needed.

Well, then there was this:
 

Pardon my ignorance, please.  I'm new at this.  Izzy is my only child.  I've never dealt with any sort of hearing loss situation before.  How am I supposed to know what she is experiencing without her telling me?  How am I supposed to know what I can do to help her without the guidance of professionals?  Randy and I have followed doctors orders.  Perfectly.  So, why, did I have to see this video shared by a friend on Pinterest to have any idea of what my child's hearing loss might sound like?  Why did no other professional provide my husband and me with this information?  Why did I have to read in an article that a cochlear implant could be the best option for people with Izzy's type of hearing loss?  I won't lie.  This made me upset. And it made me feel stupid.

It simply comes down to the fact that parents are the best advocates for their children.  I simply needed to realize that and start demanding better treatment and care for my daughter.

So, when we returned to our "primary care" otolaryngologist and he suggested new tubes because she still had fluid behind her right ear drum, I asked about a cochlear implant.  I told him about the video above.  About how I wanted to be more proactive with her care.  About how I wanted another opinion.  I asked for a referral to Vanderbilt's Monroe Carrell Children's Hospital where they do more cochlear implants on children than anywhere else.  He didn't seem upset by my request.  We returned later to have a hearing test, and a few days later I received the call with our appointment at Vandy.

Our first visit to Vandy was unlike anything we have ever experienced with medical professionals.  We really had no wait time, considering the hour time difference really messing with our concept of time.  First stop was with the audiologist.  Izzy's hearing test was long and tiring for her.  Afterwards, we were directed to our new otolaryngologist.  Again, no wait.  This man, who does not do cochlear implants, was kind enough to call his partner in to speak with us after seeing Izzy's audiogram.  We had to wait on the partner to come into our room because he was in surgery, but while we waited, our new doctor asked plenty of questions.  Including one that I'll never forget.  He asked what had taken us so long to get there.  Of course, he was more tactful.  My response, "We've been doing what our doctors were telling us."  Izzy had made progress.  Izzy was hearing better.  Obviously, though, our previous treatment plan was much more conservative than what the doctors at Vanderbilt would advise.

We left there with an appointment for new tubes and an explanation why those tubes are important.  We also left with a plan to begin our journey for cochlear implant candidacy.  First up, during the PE tubes surgery, was imaging.

Before Izzy went back for surgery, our doctor comes to tell us he looked at the CT.  While he only saw one view instead of all three, he noticed something very telling.  Izzy has an EVA on the right side and possibly on her left, which, as we found out as soon as the doctor left us, can mean lots of different things for what Izzy could possibly face in her future.  For now, it means that Izzy cannot participate in any full-contact sports like soccer (we played that last year), tumbling (we were enrolled through next spring), and the like.  A head injury could cause the EVA to burst, which would most likely lead to total hearing loss.  Our doctors at home said Izzy's sensorineural hearing loss was just congenital.  Never did they give any potential explanation for what could have been the underlying problem.  Never did they mention an EVA.  And most certainly, never did they allude to other parts of Izzy's body being compromised by some sort of genetic disorder.

It goes without saying that Randy and I got more than we bargained for by asking to go to Vanderbilt, but we are so thankful to have possible answers, even though we still have a long road in front of us before we have definite answers.  We return in October for a full report on Izzy's CT scan and more hearing tests to continue our cochlear implant candidacy.  Soon, we intend to have genetic testing done so that we know what our baby will likely face.

I admit that I continually feel like a fool.  I feel like I have failed Izzy so many times already in her short life.  Where would she be if we had truly discovered her hearing loss while she was an infant?  This is where we are, though.  Trying to correct problems, habits that have already formed.  Trying to move forward the best we can.  Trying to figure out what lies ahead so that we can prepare for it now. I have a feeling we are in the best hands, and Izzy's life, as well as ours, will change dramatically soon enough.

Is this the worst thing that could happen?  Absolutely not.  Randy and I both say over and over that we are in a much better situation than so many others.  Going to Vanderbilt is a reminder of that.  So many children suffer things that I cannot possibly fathom.  For their parents, I ache.  Together, though, I imagine that we share similar goals for our children.  Parents want what is best for their children.  We want to know that we can trust those who are responsible for our children's health care.  We want to know that there will be better days ahead for our children.

While I realize my writing this blog is more for myself than anyone, I do hope that somewhere out there is someone who gets some benefit from reading our story.  More to come...

For now, just look at my baby.  :)

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And the winner of the Cupcakes for Izzy raffle is...

Hearing aid update...

Izzy received her hearing aids on December 10th thanks to the many people who so graciously made donations to our Help Izzy Hear fund.  While she didn't give us any sort of amazing reaction like you see on some videos that circulate social media outlets, she did let me know she was hearing something.  Throughout the rest of the day, I noticed a considerable difference in her responses to me.  No more turn it up in the car, no more yelling at her with her back to me, etc.  Since that day, we have continued to notice a remarkable improvement in her ability to communicate.  She hears us so much better, and we are hearing her enunciate more sounds in her words.  Obviously, her speech is still a concern for us, but with her speech therapy at school, we are confident we will see even more improvements much quicker now.

Unfortunately, two days after we got the aids, Izzy came down with a double ear infection.  Several days after that, the ear infection was still there and she was diagnosed with the flu.  As you can guess, sickness, especially when fluid is on her ear drums, still inhibits Izzy's hearing.  Again, though, we still have witnessed major improvements.

Randy and I can't thank you enough for helping us take care of our girl's needs.  We have been truly blessed.



Here is a quick video from the doctor's office.  The doctor was explaining to me how the batteries work and how to place the aids in Izzy's ears.  Towards the end, you'll see Izzy's eyes show her reaction to hearing noise through her aids for the first time.   Plus, you'll get a pretty good look at what $4,000 looks like.  :)

Here are some images of Izzy showing off her new accessories:

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So close!

We have received some crazy donations in just a couple of days, and I have been overwhelmed by the love and support we have received from our friends & family, strangers, colleagues, and students (current and former).  Today, I received the sweetest note from Elizabethton's TCAT Nursing Program's Honor Society.  While I originally thought the entire donation was from a group of strangers, of course, in the letter, I was informed that a former student shared our story with her classmates.  :)  I'm so glad that my job allows me to make connections with so many people.  It's easy to forget about some of these connections, but through this experience, I've been reminded that distance, time, and circumstance won't stand in the way of a heartfelt gesture.

And here we are.  Only $85 away from our goal of $4000.  WoW!  I cannot thank everyone enough!  While we have had several fundraising activities other than the GoFundMe page, I have entered everyone's donation on that site.  If you're interested in seeing who else has supported Izzy's cause, take a look.  Thank you all for your generosity!  

We aren't finished with our fundraisers just yet.  My colleagues have planned a silent auction at HHS's first home game on Saturday, December 6th.  Also, my sister is still taking $20 donations for the Cupcakes for Izzy raffle.  Because Izzy's need will be an ongoing expense, any additional funds raised over the $4000 goal will be added to her fund to continue paying for additional molds, future audiologist appointments, and any other cost associated with her hearing.  We have an appointment in February to see our ENT for a checkup, and we will return every six months to our audiologist to check the fit and programming of her devices and to evaluate her hearing.  Let's just hope that Izzy's ears do not grow as fast as the rest of her!  A pair of jeans that fit just a couple of weeks ago definitely did not fit yesterday morning.  

Tuesday was supposed to be Izzy's first day of school, but the snow delay kept her at home with me.  So, tomorrow morning, she'll get to finally experience her newest classroom and classmates.  I can't wait to see her progress!  On Friday, her preschool is having their Thanksgiving party.  I now she will have so much fun.  She loves school and "fwaying" (playing) with her friends.  We are so thankful to live in a community that accepts and loves Izzy.  Hopefully one day in the near future, Izzy will be able to tell Randy and me all about her day, her friends, the games she has played, and the lessons she has learned.  How exciting!  And we have all of you to thank for that!  :)  

Talk about a crying mess!

This morning, my fellow colleagues and students caught me totally off guard.  Before the bell rang for first period, our principal called us all to the gym with no explanation.  I was called to the center of the gym floor and handed a money bag full of student and faculty donations totaling $735!  I had absolutely no idea, but my Bulldog family had been raising money by selling baked goods and Dr. Enuf's, along with accepting other donations.  Well, this momma, who tries to maintain a pretty tough exterior around these almost grown children, lost it in front of everyone.  Good thing I was already running late and didn't have on my normal amount of eye makeup!  

Randy and I can't possibly thank each person who gives to Izzy's cause the way that he or she deserves, so my simple, overused thank you will have to suffice.  As for today's surprise, I am so blessed to have my Bulldog family.  I can truly say that no matter how difficult things get at work, whether through policy changes or confrontations in the classroom - which are few and far between - I know I am surrounded by people who will care for me and support me.  That fact alone comforts me.  

For my students: bless you.  I hope you will always have that giving heart to provide for others.  A student in my fourth period said it best:  "Look out for others, and they'll look out for you."  How true.  

For my co-workers: I've learned so much from so many of you.  I've learned patience.  I've learned when to shut my mouth.  I've learned when to take action.  I've learned empathy and compassion.  You all are my second family, and I am grateful for more than just this monetary donation.  I'm grateful that I work side-by-side with the best people in this business. You are an inspiration everyday to our students, and working hard to help Izzy is another testament to your commitment to molding the minds of our current students.  They see how much effort you put into community support, and they learn how important it is to take care of others, including our own.  That's more powerful than any information in a textbook.  

I'll remember this morning as the most humbling experience of my lifetime.  

Lastly, a big thank you to my mom, sister, and nieces for helping in these fundraisers.  They baked plenty of goodies for bake sales at school.  

My goodness!  Izzy has so many people who love her.  What a blessing!   

Izzy's hearing aids will be PINK!

We had a busy afternoon of doctor visits today.  First, we saw our ENT who looked at her ears and removed some nasty gunk from her infected right ear and the tube from her left ear.  Izzy was such a trooper!  She laid her head down on the arm rests of the chair on either side and let the Doc do what he had to do.  She barely flinched!  We've been using Debrox to help remove her ear wax.  Today, our doctor recommended using a couple drops of baby oil before bath time as an alternative.  I would have never thought of baby oil!  We'll give it a try in a few days.  

Next up was our audiologist.  We sat in his office for at least an hour listening to our options and how hearing aids and other amplification devices work. All the while, Miss Izzy stayed over by a table with all of the demo aids.  She would pick one and try to put it in her ear.  Then move to the next one and repeat the process.  She knew what to do without us having to show her.  I suppose that is a sign that Izzy already recognizes her own needs.  Funny how things work out that way.  

Finally, Izzy had a very important decision to make.  Which color?  Of course, while wearing her Spiderman shirt, she chose pink!  Her aids, tubes, and molds will all be a light, girly shade of pink.  :) 

Our audiologist explained that her molds can last up to a year, depending on how much she grows, of course.  Each set of molds is around $150.  The aids can last up to five years and sometimes even longer.  Since we are not sure if Izzy's hearing will change significantly over the next few years, the aids we chose will allow for changes up to 20 decibels, which is a very significant difference.  The great news?  We get a comprehensive warranty!  Plus, we can get these babies insured, which we will. They are so tiny.  I can just imagine them slipping off Izzy's ears, falling to the floor, and either being lost forever or being trampled to the point of nonrecognition.  So, a "kid kit" is in order, too.  She will have some sort of device that attaches to both aids to ensure if they do fall out of her ears, they won't crash to the floor.  

The best part of the visit - at least from this momma's perspective - was our incredible doctor.  He took the extra time to look at and explain Izzy's old records from her hearing screening just after she was born.  Also, he filled out a lengthy form and wrote a letter to complete our grant applications for HIKE Fund, Inc. and for United Healthcare Children's Foundation.  Instead of kicking us out at 5:00, we shut the place down around 5:20, which means he spent yet another two hours with us.  This man is earning his pay, but he is worth every penny.  We are so fortunate to have a doctor who understands that we have no idea what we are doing! Fortunately, not only does our doctor understand because this is his profession, but also his son experiences the same type of hearing loss as Izzy.  Again, funny how these things work out.  

So, this was a big day for us. Now, we'll wait for a few more weeks to get Izzy's pink hearing aids.  I know that will be a big day for us, too.  I can't wait to see the changes in her hearing and communication.  

To all of you who have donated and/or shared our story, THANK YOU!  Randy and I are so humbled to have such amazing support from family, friends, and even complete strangers.  Bless each of you! We are almost halfway to our goal!  Wow!  If you are local to Northeast TN, don't forget our Cupcakes for Izzy raffle!   

Here is a look at Izzy getting her casts made for her molds.  Even the putty was pink! 
  

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