4th Birthday Photo Session

4th Birthday Photo Session

Tuesday, September 11, 2018

Does It Smell In Here, Or Is It Just Me!?!

Tonight, on my way home from work, I stopped by my neighborhood grocery store.  Actually, it's not really anywhere near my new neighborhood, but I can't stand trying to get in / out of the two stores closer to my house.  Plus, I seem to spend about $30. more each visit at the neighborhood stores because they're grossly overpriced.  So, tonight, I picked up some of my favorite flowers to just add a little something extra to our new home.  The lady that lived here before us had a really old dog, and the front of the house seems to smell like an old, wet dog -- says the bionic nose.  I intend on getting the air ducts cleaned, but cleaning the floors myself have not taken that scent away.  EWH.

Enter the subject... sense of smell.

I have a very heightened sense of smell.  Today, a lady in my office wore a perfume that one of my bestie's used to wear and I was honestly gagging (no offense to my friend.)  It was strong, pungent, and I'll spare you my monolog about people's overindulgence of perfume/cologne.  Now, enter the pungent lily, my favorite.  First of all, it's a natural smell - so I don't mind it at all.  Second, it's pretty. Third, I don't dare ask Andi to smell it.  

When Andi was in the NICU (Neonatal Intensive Care Unit -- for those that luckily don't speak hospital like me!) she had a plethora of tests, obviously.  She had an MRI, CAT scan, blood work, this, that and the other... and sure as shit, they determined that Andi probably would lack a sense of smell due to her bilateral choanal atresia. (Nasty surgery that clears tissue and bone to create a traditional nasal airway... imagine that.)  Yep.  Over the years, as she's grown more aware, we've been able to confirm that she can't seem to smell anything, only pretend to smell it.  Imagine that for a minute.  You can't smell bacon frying on a Saturday morning.  You can't smell the rain.  You can't smell coffee. You can't smell the most gorgeous flowers.   To me, smells trigger memories.  Smells transport me. Smells can make me gag.  Smells can make me swoon.  There are about three men's cologne's that make me giddy.  There are zero women's perfumes that delight me.  There are about five flowers that just remind me of an easier time, remind me of an uncomplicated life: Jasmine.  Lilies (mainly the China Star).  Roses.  Gardenia.  I love these scents.  Oranges, Lemon, peppermint essential oils... hello!  But Andi... she can't smell any of this.  She'll never smell pizza, butter... but the converse... she won't smell when the garbage is rotting, when her deodorant has failed, that her gym smells like a dirty belly-button.  (That was my attempt to not be foul, Dad!)  LOL!!!!  It fills me with extreme sadness that she will miss out on this incredibly important sense.  I base so much of my world on sense of smell, that, it breaks my heart that she won't have that.  

Mind you, where there are diminished senses, the others are heightened... so I find comfort that Andi will have a better sense of everything else, and then some.

But bacon... oh, for the love of the smell of bacon frying in a pan.  (Sorry my veg/vegan friends...) but bacon was one of three things that switched me back to being a full fledged carnivore.  

Andi will be fine... but I hope to adequately arm her with the tools and the words, to ward off snide comments by other kids - when she admits she can't actually smell what they're talking about.  The assholio who has her smell rotten food or expired milk while the rest of the group laugh.  I don't want that for her.  I know I can't be there every second of every day and shield her from the bullshit of life. But, I do know I can outfit her with her wit, wisdom and vocabulary to deflect and detour this undesirable reality of life.  

Most people go to the grocery store and don't have to ponder half of this shit.  Welcome to the glimpse of our reality.  And next time you "stop to smell the roses" fricken take an extra couple of minutes to really STOP, SMELL and SAVOIR that scent... something that Andi will never be able to do.  

Thursday, September 6, 2018

Magical Mermaid

Recently, we bought a house.  When shopping for a house, we had one thing on our 'wish-list' for this house - and that was a pool.  In the south, it's hot much longer than between Memorial Day and Labor Day - so while the usual neighborhood pools are shutting down, we will still be able to utilize ours.  With this pool, came the 'must-do' that has been on our list for years -- teach Andi how to swim.  While she's had group lessons with an aide... which isolated her from the group, and one on one lessons at the neighborhood pool -- which often distracted her.  This time, we were insistent that she gets one on one swimming lessons in our own backyard, and we don't care what they cost.  (Actually, we do care, but... now we'd pay even more.)

Enter Gene.  Gene is an extremely special man.  He was in the Marines for 30+ years, and now teaches kids, especially special needs kids, how to swim.  It's his speciality, "to give them the magic."  He has this way of lighting up the room or backyard with his enthusiastic energy.  He captivates Andi with his stories, his encouragement, and his instruction.  This man is simply awesome, and Andi professed her love to him on the very first day.  She often does her excited clapping while listening to him speak.  She's concentrating, listening, and so excited to get going she simply can't sit still. 

The first lesson was really just an assessment.  Get to know Andi, let her get to know him, see where her skill set level is, and what her strengths and weaknesses are.  This collection of data enables  him to build her lesson plan, tailored to challenge her and turn her into a magical mermaid.

He comes 3 times a week, and that's mainly to guarantee that she will be a swimmer.  Andi really looks forward to her sessions, and they are definitely paying off.  Gene promises these lessons are going to strengthen her legs and her arms, considerably.  For a kid with low tone, and taking a break from physical therapy, gymnastics and ballet -- this is huge.  

Two weeks ago, Andi would not put her head in the water.  The only thing I've ever seen her do is blow bubbles in the water, and even that required encouragement.  During her assessment, her first "lesson" if you will, Gene had her putting her head under the water.  No joke.  I didn't put her ear plugs in though, as for that first lesson, I wanted her to really be able to hear him.  Boy, was that a mistake.  The water got trapped in her good ear, behind the ear tube keeping the ear open. She had to do wall stands (feet up on the wall, a supported handstand if you will), and shake her head to get the water to drain through the ear tube.  Apparently, she was rather uncomfortable until the water released from the ear.  I felt bad.  But now, she's wearing her ear plugs, and she's kicking butt on her lessons.  It seems she can actually hear him through the ear plugs too, which helps. I'm sure all the neighbors can hear too - but oh well.  The other day, he had her floating face-down in the pool while he counted 1-2-3-4... as she held her breathe.  It was totally amazing.  We couldn't believe it.  It makes me excited for each and every lesson so I can see what she's going to do next.  This is by far, the best money we've spent in a long, long time.  Even better than buying the house with the pool, is meeting "Gene, Gene the swimming lesson machine!"  *insert hearts of gratitude here!*

My assessment day ... first time putting my head underwater!

Practicing, by looking at the mat with all the ocean friends on it.  My favorite is the turtle.

Face down floating, looking at the mat with my turtle on the ground

We couldn't be more thrilled by the quick progress that Andi is making with her swimming lessons.  We also couldn't be more grateful to score this amazing instructor, Gene. I failed to mention that Gene also wears bilateral hearing aids and is fluent in sign language.  I mean, this guy is simply a gift. He promises, it won't be long until Andi is transformed into a magical mermaid.  The way things are going, I believe it.

Friday, August 31, 2018

The Heart Surgery Anniversary -- 8 Years

I started this blog August 10, 2010 as not just a way to inform Andi Bean's followers of the day-to-day updates when she was medically fragile, but also a way for me to process the daily grind of hospital living, specialists galore, and a life I never expected.  This is the time of the year where I truly stop and reflect on where we've been and where we are today.  It is with humbled gratitude, and honestly, heartache -- that I reflect on Andi's complex open heart surgery a mere 8 years ago (9/1/10).  Why heartache?!  My heart has broken a dozen times for friends we've recently lost, some that we have followed from the start. (Asher, Noah, Kane, Moriah... just to name a few.) It's been a hard, hard road - but it enables us to pause, reflect and appreciate all that we have survived.

At my every 2 years cardiology appointment, 2018
Looking back at the blog is honestly something I love to do.  I rarely make time to do it anymore, but when I do - I read an entry and it transports me right back to where I was, what we were experiencing and how it truly felt.  Some of my best writing was when we were confined in the hospital.  I had very little else to do. Although I was supposed to be working, people tended to leave me alone - knowing that I was facing every parents worst nightmare.  

Andi finally had her heart surgery, Complete A/V Canal,  (A Complete A/V Canal is a complex heart surgery that repaired a hole in an upper chamber, a hole in a lower chamber and made one large valve into two.) on 9/1/10, after a few weeks of reflux-induced (stomach, bladder) infections, and pneumonia.  She was such a mess in heart failure.  The diuretic Lasix (and sometimes a second, potassium-sparing  diuretic) would make her pee off excess fluid, so her heart wouldn't have to work so hard, but if she lost too much fluid, she'd dehydrate and have trouble breathing.  It was such a shit show of I don't know -- things like "we'll see," "it depends," and "Andi will let us know."  Like most medicine, it's a damn guessing game. A balancing act of chemicals.  Sad, but true.

Reading some of those early entries, makes me forget all the many things I should be doing (including getting Andi off her iPad and off to bed)... and transports me back to a time where we weren't sure we would even be together another day. 

Here are a few of my favorites:

Sadly, the photos of that time were lost.  I mean, I still have the photos, but they were deleted from some photo album account that fed this blog.  Honestly, I just haven't made time to plug those old photos into this blog.  Sort of low on the totem pole of life, ya know?  But the visual account of what her frailness looked like.  The sweats from the Lasix, the mouth goobers, the big ol' dark eyes on this lil' bitty head. 

It also doesn't surprise me to revisit the damn leaky g-tube.  I forgot that bitch (sorry, Dad... but honestly, it was a hell of a thorn all damn day long) started leaking way back then.  I think it was March of 2011 where her pediatrician had her admitted to figure out why she was dehydrating.  That, and to probably get me out of his office several times a week complaining about the leak.  When they pouched it (and they admitted it was not a great method of collecting data), but they determined she was leaking out 25-35% of each feed, sometimes up to 50%.  Uhm, yeah. The "solution" caused more problems in the end, and they had to surgically tuck her stomach lining back down the hole and close it up.  Uhm, yeah.  So, it's interesting to me to revisit these entries and transport myself back then.  I am guessing the entire medical community is thankful that they saw me then, and not who I am today.  My mouth and I probably wouldn't have allowed half of the guessing game bullshit she endured.  I found my voice as I got more entrenched in the life as a CHARGE parent.  But today's voice would be a version of an angry Madea who would probably get security called, repeatedly.  Again, it's a good thing for them.  Most of them are good people.  The g-tube surgeon though needs a rusty fork taken to his private parts.  Just sayin'.  See... I'm not as pleasing as I used to be... but then again, we survived all this shit.  We were lucky. 

Still humbled, still grateful.  I still think of Dr. Stephan Langley and his incredible team who performed our successful surgery.  I am sad that I no longer know where he is to send him a yearly heart surgery update, and I'll probably forget to put together an update card for her old cardiologist (Dr. Kelly) at OHSU, but damn, if we aren't totally grateful to all the many people who helped get her here.  (Minus of course the first (*&^$@&a$$clown) g-tube surgeon who I want to poke holes in.)  The second surgeon though, whose name honestly escapes me this minute, his work was perfection.

And furthermore, we move forward with our broken, one-mended heart, and keep our friends we've lost so close to those hearts.  None of us are guaranteed a tomorrow.  This life of ours, reminds us of that more often than yours likely does.  It is in their honor we hope to remind you, so you cherish your time by making it the best use of your time with us.  Grateful.  Humbled.  Love. 

Watching Moana while getting an echocardiogram.  I delighted the echo tech by yelling/screaming during a scary part of the movie.  She easily jumped a foot or two and then giggled when she realized what I was doing.

Flirting while getting my ECG.
Just to reiterate, the cardiology check-up showed her heart function is totally stable and better than deemed two years ago.  Her cardiologist is very happy with how she is doing.

Now, the CHARGE Syndrome Foundation has begun a new fundraising campaign. Andi's personal goal was somewhere around $8,000,000.00.  Given you apparently know Andi, have possibly read about how CHARGE Syndrome has affected her life, the good and the bad... I would ask that you consider clicking over to her fundraising page and throwing a few bucks toward "her" effort -- okay, mine.  If we raise $3k, we get a free admission to conference in Dallas next year.  Although, if we achieve that, I will likely donate it to someone that otherwise wouldn't be able to attend. 


So as we celebrate our 8th heart surgery anniversary, I ask that you be mindful of your own wellness, be thankful and kind, and be extra generous by helping to kick Andi's fundraising campaign into gear. 

Tuesday, August 14, 2018

Surgery #10

Today, I scheduled Andi's surgery #10... a bilateral bone conduction anchor surgery.  Just after Thanksgiving, Andi will be going under for an anchor (a big screw) being placed behind both ears, feeding sound directly into the bone and thus, the nerve. It will take six months healing to allow the bone to surround the new hardware.

Surgery #10.

We haven't done any sort of "procedure" since January 2015, when we put a set of "T-tubes" in her ears.  A long-enduring set of ear tubes to help her ears properly drain.  One of those t-tubes is still in place today, in her "good" ear - if you will.  Prior to this t-tube surgery, we haven't had a "real surgery" since surgery #6 I believe.  i think 7, 8, an 9 are ear tube placements.  But still, a surgery is a surgery, and when it comes to a kid with CHARGE Syndrome, nothing is guaranteed.  When it comes to another anesthesia, intubation, intrusion... nothing brings back "medically fragile" parenting PTSD than the simplest words used in a hospital.  Words like,  'it depends', 'deductible', 'just in case', and my personal favorite -- the eau du hospital hand sanitizer scent.  That is what really sends my stomach into Cirque du Soleiel stomach flips and feeds the anxiety.

But to answer the "why!"  Why put her through this surgery.  First of all, we're doing bilateral.  Andi only has a functional auditory nerve on one side... but, technology has advanced to the point where they can implant both sides with "an anchor"  (a fancy screw in her skull), and then program the hearing devices to feed into the left ear, so that she'll be sent auditory sounds from both ears, but to the one ear that can process sound.  It isn't guaranteed that she'll be able to determine what side she's hearing from, but it will likely alleviate a majority of the "what?" from the right side.   Our ENT described it as such - she'll get 80% hearing from her left ear, and the other 20% will be sent to her left ear.  It's going to improve her hearing.  And transitioning from the soft band (the headband she's been wearing these past few months) to the anchor, will improve her sound quality, her hearing - as it will be a more direct line through the bone.

Our objective is what every parent wants, the best quality and quantity of life that we can provide.  For Andi, one of the most sociable, musical and extremely engaging children I've ever met - improving her hearing will only strengthen her ability to become the Dr. she has been programmed (insert Mom's dreamy sigh here) to be.  This kid with her personality, her incredible memory, her command of knowledge, her ability to empathize, and her own set of experiences... who else would you envision taking care of your grandchildren or grandchildren's grandchildren?  I think our lil' Andi Bean will be the perfect stewart of all things medical, and write a path unlike anyone else.

Risks.  One risk is infection.  We have a plan in place and our ENT swears we will do everything in our power to minimalize our risk, which she swears is small.  Another risk is slippage or dislodging the device.  While it's healing for six months, the base post will be under the skin - held in place by stitches to keep it under the surface while the bone grows around it.  There will be no need to cut her hair, or shave a section of her hair off.  She also plans to put a secondary hole next to where the main post will go, in case we run into any sort of issues, such as dislodging the initial post.  None are expected, but it's a precaution they take while in there to aid in speeding up the healing time should the secondary hole be needed.

Surgery #10.
We are giddy at the opportunity for technology to advance our baby girl's hearing.  We are nauseous at the idea of another procedure, another surgery, another recovery, more pain management, more downtime.  We dread the idea of infection, the idea of one wrong move in something such as gymnastics class knocking a well-intact post out of place.  But, generally, any sort of surgery produces a whole stream of anxiety that most people don't understand unless they've lived it.  Sadly, tonight - I'm far too tired to explain it any better.

Lastly, need I remind you that this is all in attempt to allow Andi to utilize the lately technology enabling her to hear as well as she will at this juncture... (until technology advances even further.)  Our surgery is slotted for after Thanksgiving.  So, please... start laying out your good juju for our Andi Bean.  And start stocking Mommy's Vodka cabinet...she's going to need it.  *kidding on the vodka, Dad!*  :)  

Wednesday, June 20, 2018

Floating Hearts O' Gratitude

Today we saw Andi's hunky cardiologist.  Sorry, but he is easy on the eyes!  Complex kids Mom's feel me on this right?!  It had been two years since we checked her repaired heart.  Again, Andi had a Complete AV Canal.  She introduced herself with gusto and they were instantly smitten.  The entire staff started calling her "Princess Andi!"  She breezed through the EKG and then the Echo, and then we reviewed the findings with her cardiologist.  He said, "...last time, I deemed it mild-to-moderate leak on the one valve, but given today's findings I question why I even said that.  It'd definitely just a mild leak and I couldn't be more thrilled."  The other valve is a minimal leak.  When she lays down, he can hear a slight murmur, but when she stands and clenches her fists, he can't hear it at all.

Basically, her heart is as good as he could hope for.  The more activity she wants to do, the better.  He said, 'see you again in two years!'  Then he said Andi wins the prize for cutest glasses and coolest shoes.  So she promptly asked, something along the lines of 'what do I get?!' like all good princesses should.  He said he didn't have any prizes, but two thumbs up.  She wasn't sold.  In fact, I think she felt ... undervalued.  So she asked, 'do you have any stickers?' to which he gleamed, 'why, yes, we do have stickers!'  Then he asked if she liked granola bars.  'Yes!'  So, Dr. Hunky-pants retrieved the granola bar out of his own lunch as a reward for Princess Andi.  Food and stickers win.

So, we have floating hearts of gratitude above our heads today.  Grateful for the stability of her repaired heart. We got really, really lucky and there are moments throughout the year where I just pause and think about Dr. Langley and his incredible team that repaired her complex heart defect.  Sending floating hearts of gratitude and respect to them as well. 

Friday, June 8, 2018

Heavy Hearted Response

Today, they held the service for Noah Ashton.  Noah was a 6 year old with CHARGE Syndrome, whom we've known nearly his whole six years. Noah passed away in his sleep, for reasons unknown. The service was streamed online for consumption.  I was at work, so I chose not to login as no one needs to see me fall apart at work.  Our community has worked to rally around the family, and our profile pictures are all the same, and we posted photos saying 'CHARGE On Noah!'  It is one of the few ways we can embrace the family from afar, to let them know that we are there with them, trying to hold them up through this unimaginable time. 

Noah has been in every CHARGE Through The Year Calendar I've produced.  A gorgeous boy with the sweetest demeanor, and devilish look in his eye.  He has been a part of this path for as long as I can remember being on it.  I just can't even believe he (and Asher, and Kane) is (are) gone!  My heart hurts.

Here's one of Andi's photos:

An article in their local paper.
Father's 'shooting star' lived his best life > Medicine Hat News

Go Fund Me Page To Support The Ashton Family:
Go Fund Me Page To Support The Ashton Family

Our community has endured 8 losses in 8 weeks.  Three of them I followed religiously, for years.  These kids have been a part of my every day.  I send all families my love, but, I have to single out my closest three.  Ladies, I love you with my whole heart and I wish I could say or do something to take a smidgen of this pain away.  Tell you this, you want to escape and come hide out here for a spell, I will find a way to make that happen.  Just give me the word!  Seriously.  

Other than donating, how can you help?

Honestly, give blood.  I gave a pint today and lost a pound finally... I mean, there is an upside!!!  I was dehydrated, so her attempt in my left arm had a vein disappear.  So, although I look like a junkie with multiple holes in my arms, I felt that was the best way I could honor our friends.  

Treat yourself, treat others with kindness.  Give back. Donate. Donating your time is the most personal form of charity, as although we all can earn more money, we can't earn more time.  Maybe treat yourself better than you have been (cough, cough, Anna!)   These kids struggled through so much just to survive.  Cherish your health. Cherish your wellness.  Support those around you by being mindful of your footprint on everyone on the planet.  From that jackass on the freeway, to that extra-chatty lady in Subway who was probably just looking for someone to converse with.  Be good to one another.  And spread the word of CHARGE Syndrome.  It's not known enough... and awareness is one way we can help future families, future diagnosis, future Dr's and Nurses.  

Charge Syndrome Foundation  (Link To Their Website)

Charge Syndrome is a recognized pattern of genetic birth defects.  At one of the conferences we attended, it was explained that essentially, when the body was getting put together - the directions were lost.  So, with the road map lost, there are "issues"...  hearts with holes in them, or valves that don't quite work right.  Eyes with vision issues, mainly coloboma's.  Ears that don't quite hear.  Noses that need to be opened because the air-passage way was clogged with bone/tissue (choanal atresia).  Lungs that are in chronic attack.  I can go on and on...   Again, CHARGE is an acronym for potential issues.  From the CHARGE Syndrome Foundation website:

The letters in CHARGE stand for: Coloboma of the eye, Heart defects, Atresia of the choanae, Restriction of growth and development, and Ear abnormalities and deafness. Those features are no longer used in making a diagnosis of CHARGE syndrome, but we’re not changing the name.

Give to the Foundation that supports families... that's huge. My friends started an amazing non-profit in honor of their son and they work tirelessly to support families in the CHARGE Syndrome community.  They have sent dozens of families to the past two conferences, which honestly is like going to Disneyland for us. Going to hang out with your tribe for a long weekend is probably better than Disneyland.  It's like one giant family reunion of people who just 'get it!'  CHARGE For Connor is another great way to support our community.  http://www.chargeforconnor.org

Lastly, did you remember that you can order your amazon.com stuff through a special website and it will donate a portion of your purchases to a charity of your choice?

Select 'CHARGE Syndrome Foundation' or "CHARGE For Connor"

Every little bit of funding and awareness can help us all.

Again, my love to the entire CHARGE Syndrome Community, especially my girls.... Lisa, Laura and Alicia.  Love you all.

Wednesday, June 6, 2018

BAHA! (...and I don't mean taco's!)

At Andi's overdue ENT / Audiology appointment this past April, we met her new audiologist, Dr. Steve.  Dr. Steve tested Andi's hearing using her conventional 'over-the-ear' hearing aid that's she's been saddled with since she was 4 or 5 months old.  Just to point out, and over-the-ear hearing aid transmits sound through the ear, all the fluid, wax and seasonal allergy congestion she experiences... and actually all that diminishes the reception of sound for her.  Well, according to Dr. Steve, given Andi's middle ear hearing loss, the bone conduction hearing aid would better suit Andi's hearing loss needs, actually improve her hearing.  (Keep in mind, Andi is absent or has an incredibly small nerve on her left ear - so that ear remains unused, unaided.)

Bone conduction hearing devices. ... A bone conduction hearing device is an alternative to a regular hearing aid for those with problems in their outer or middle ears. It transfers sound by bonevibration directly to the cochlea, bypassing the outer and the middle ear.

Today, we met with Dr. Steve again with her Dad in tow, and we discussed what the bone conduction hearing aid using the soft band (headband to hold it in place) is, does, and how he thinks it will help her hear better.  After programming the device and putting it on, Andi went into the hearing booth.  He tested her using the bone conduction hearing aid and then again with her typical hearing aid.  The results were pretty amazing.  Now, I get most people aren't equipped to read audiograms like a CHARGE parent  (...just a perk, don't be jealous!!!)   

A = With the Typical Hearing Aid
B = With the Bone Conduction Hearing Aid
HINT:  the higher on the chart you score, the better you can hear.

So, we're doing a Bone Conduction Hearing Aid trial for 2.5 weeks, then we'll go see Dr. Steve again to discuss our experience.  Do we see noticeable improvement?  Do we want to stay with this device?  Do we want to move to the BAHA?  What's a BAHA?  A BAHA is a Bone Anchored Hearing Aid.  That means that they would surgically implant an anchor (basically a screw that send the sound directly into the nerve) and we would attach the device (after several months of healing - allowing the skin/bone to grow around what is basically a screw in her skull)... and if we were to do this, her hearing at the higher pitches would improve even more because it would have a more-direct-line of sound.  

RISKS:  Haven't spoken with the ENT/surgeon yet, but there are risks.  And what I've gathered from my fellow CHARGE families, main concern is an infection that will never go away.  The surgery is outpatient, and almost always covered by insurance.  Go figure, they won't cover a hearing aid, but they will a surgery?!  *insert eye roll here!*  But, we'd have to pay our out of pocket/deductible... but whatever.  The healing time is several months.  I imagine there would be some initial pain management to address.  Other than that - I don't know yet.  But let me tell you this.  Andi loves music.  I mean, she watches videos on You Tube all day long on her iPad.  She currently loves watching The Voice and anything that has to do with music.  Music helps her with speech, enunciation, listening, vocabulary -- good and bad... and it is really a motivator for her.  Today, as we left the ENT/Audiologist office for Day 3 of Summer Camp.  First, we stopped and listened in the parking lot. 

Me:  "Andi, do you hear that bird chirping?"
Andi:  "yes!"

Me:  "Andi, do you hear that car horn honking?"
Andi:  (almost repulsed)  "yes!"

Me:  "Andi, do you hear that sound that sounds like a motor running?"  (I honestly don't remember what it was...maybe a lawn mower?)
Andi:  "uhm, what's a motor?"
... parent fail... I  couldn't figure out how to explain it.  DOH!

In the car, before we even started our drive, I started crying.  I had to explain to her how excited I was for her and why.  To improve her hearing will give her such a better chance in this world.  There have been so many times where she just puts her hands up in surrender and says, 'Mom, I can't hear them." (the kids that won't play with her).  I was so overcome by the potential of improvement for her that I couldn't help but cry.  We put on some of her favorite tunes.  This Is Me from The Greatest Showman.  She absolutely lit up hearing more of the song than ever before. Then we went to our ol' Moana favorite, then onto Try Everything from Shakira... I honestly don't know what Disney movie that's from...  oops.

The difference was instantly noticeable.  

When I picked her up from Summer Camp, her device was in the completely wrong position.  I tried to reposition it, but there's a bit of a learning curve for me too.  All the way home I heard, 'What did you say?!'  It was gut-wrentching... but we've since repositioned it and she's learning about it, just as I am...  We'll see how this two & a half week trial goes, but one thing has already been reported, Dr. Steve - we believe you're genius.  Can't believe it's taken us 8 years to get to this level of hearing.  Failure on previous audiologists, if you ask me.

Will continue to report... wish her luck!