Girl's Adventure

Andi and I decided to steal away for one more night and have an extended adventure.  We chose to head to the beach. I am getting ready to travel to Germany in less than two weeks and wanted to have a little extra special Mom/Andi time while she's on winter break.  Plus, no disrespect to my job, but I'm just not fully charged yet.  With the head-cold I've been saddled with this week, I highly doubt any of this break has been the restful recharge of the batteries I was seeking.  In any case, Andi and I found a smoking deal on a ridiculously plush resort in Destin, Florida and we drove down the three hours from Poppa & Ginga's.  It was mostly backroad country roads, but it was wonderful.  We loaded up on gas and Starbuck's and hit the open road.  The music was loud, the sunroof open, it was between 66 and 70 degrees.  Sometimes it would rain.  Other times, the windows would just be slightly open because honestly, we were warm.  It was rather windy once we hit Florida, but we made it safely, sanely and once we pulled into this posh palace - we were giddy.  

We valeted our car, because we frankly have way too much junk to deal with it ourselves.  Then, we're a Princess and a Queen... so we have to act like the royalty we are... (that's tongue-and-cheek snarky!) ... We were escorted to the registration desk by our bell capt. and what seemed like a lot of luggage for one night (mostly stuff we don't want to leave in the car!)  I forget his name but he was sweet with Andi.  But then the front desk lady got a hold of Andi's attention and before I knew it - our room was getting upgraded.  They also gifted her a bag of smores supplies, and a couple toys.  They couldn't have been more wonderful to Andi if they tried - it was really awesome! 

So, after we got to our room and settled in a bit.  Andi got to swim in our amazing tub.  Then we got dressed and went downstairs for dinner.  We had a wonderful view and enjoyed a fiesta, including roast cauliflower, steak, mac & cheese and frittes.  After dinner, we ran upstairs and dressed to go outside, a balmy 64 degrees, but windy - and headed down to the fire pit with our smores making ingredients in tow.  Andi was her usual friendly self and made friends with the other two pairs there.  They all were really sweet, and honestly, I don't think they really recognized she was hearing impaired.  Then a little girl came down with her Dad and little sister and was shocked that Andi was 8 years old and smaller than her.  Andi got rather quiet.  Abnormally quiet while the girl was around.  After they left I asked her, 'did it bother you that she said you were small?'  Andi admitted, 'yeah!'  So I had to have the talk about differences, size differences, what matters, what doesn't.  But I can't help admit that our little reverie of last retreat from our daily life wasn't jarred by the unknowing words of an adorable little girl that meant no harm. 

It reminds me that I need to fill Andi's bag with various armor to help her deal/cope/accept/defend herself from the eyes or words of others.  It's just another layer of this life to consider, to prepare for, to arm against.  

Andi is tough.  She's made out of spit, vinegar and steel... but, that doesn't mean she doesn't have feelings.  So, as we approach a new year, a new start, and new you -- please remember to tread lightly with others as you have no idea what they are dealing with... Also, choose your words with thought and grace... they stick and sometimes, they hurt without you knowing.  So, choose kindness.

And, if at all possible... choose the adventure... because you never know if  you'll ever get the opportunity to do it again.  I know these little jaunts, even just the one-day getaway have sealed a bond so tight between Andi and I - that only the teen year's will destroy!!  (HAHHHAHAHA!)  But I am glad we are able to do this every once in awhile because it means the world to me, and it means the world to her.  

Girl's Adventure awaits and hopefully tomorrow, we'll actually step foot on the beach!  

Rockin' The Mic On Christmas Eve Eve

Andi felt like performing this morning, with a background chorus of wind chimes.  

I was surprised we haven't already posted this song because she wanted to perform it at the school talent show this year.  We assumed everyone would be performing it - so we steered that song into Queen - because, well, it's Queen!   Her Dad also told her she would have to wear a beard like the character in the movie, and that quickly changed her mind.

Singing, This Is Me, I give you... Miss Andi Bean:

This Is Me!

Then, being the You Tube addict she is, Andi loves to watch and rewatch, and watch again and again, performances on Ameica's Got Talent.  This is a song she memorized watching Angelica Hale (SP?) a thousand times.  

Singing, Rise Up, I present ... Miss Andi Bean!

Rise Up

Time Of Our Lives / No Guarantees

More often than not, I sit down to write and have music playing in the background.  I usually already have an idea of what I want to capture and it's just a matter of sitting down and letting it pour out.  Today, as I sit here preparing to share biggest fears - I am taunted by Pitbull and the happy beats asking for the Time Of Our Life.  I can't help sing along.  Sometimes, it's the simple things like that that keep us from completely melting down.  

Two posts ago, I spoke of one of Andi's besties, who just had her abutments attached.  I believe I entitled that one, "It's A Snap!"  Well, obviously, that's a play on words - because this entire process is NOT a snap. It's not easy and it comes with no guarantee.  It's not carved in stone.  It's implanted in bone, and for a young child - that bone is still soft.  

Her Mom posted today that she's going under again tomorrow because "the post broke away from her bone and needs to be removed immediately."  

Refresher:  imagine a screw drilled into the bone behind your ear (your skull).  Let that heal for six months.  Then, go in and attach a post to it, that holds a snap on the outside of the skin, to which the hearing device clips into... a direct route to the hearing nerve.  Now, first of all, she is in no immediate danger, but her Mom asks for prayers and good juju for her... so please, send out your energy for our sweet friend Layla.  Let's hope the sleeper (once she heals) will deliver the foundation she needs for this to be the long-term solution.  That's all we are after... a long term solution to enable our kids access to their entire environment.  Whether it's sign language, a nurse to accompany them to school, Dr's who know their head from their ass - (sorry, but true), or modern hearing devices that bypass the problem area (Andi's middle ear structure)... I mean, we all just want the best for our kids.  Whether those kids are "typical" or "special needs" -- it's all one of the same when you cut to the chase ... we all want what's best for them.

I keep floating back to the line I've heard over and over these past eight & a half years, "I don't know how you do it!"   And I mean absolutely no disrespect, but my own family has said that to me.  Hell, I've said it to someone, cringed, and then spent the next year kicking myself that I said it.  Bottom line is that we don't have a choice.  If you're a good parent with the best intentions for your child - you do what you have to do.  Scary or not... we have to move forward trying to utilize the latest technology that gives our kids access to their environment.  It isn't easy, and it isn't guaranteed... but it is our hope that it works.

The CHARGE community is a solid foundation. The group is a united family brought together by the syndrome.  These people are, "my tribe!" These people get it on a level that sadly, one can't understand unless you've traveled that road.  It's a dynamic that I am, we all are, so grateful for.  So, Layla - this shout-out is for you... we absolutely love you!!!!  You've got this lil' lady!  

So, as you prepare for the holidaze.... please do a few things:
1.  donate blood if you can.
2.  hug your friends and family tighter than ever.
3.  help us spread awareness of CHARGE Syndrome and its effect on you.  Clearly, you wouldn't be here at Andi's blog if you didn't have an invested interest.  

Stolen from the CHARGE Syndrome Foundation website:

Overview

CHARGE syndrome is a recognizable genetic syndrome with known pattern of features. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. Babies with CHARGE syndrome are often born with life-threatening birth defects. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems that delay their development and communication. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.

Continued research is needed to help us understand the medical and developmental challenges facing individuals with CHARGE. This understanding leads the way to medical and educational interventions and therapies which help people with CHARGE syndrome overcome many of the obstacles in their lives.

One of the hidden features of CHARGE syndrome is the determination and strong character these children display.

And if unlike me, you have a few extra bucks laying around ... please consider donating to both of the following:

CHARGE Syndrome Foundation
CHARGE For Connor

While we are all seeking the time of our lives... there are no guarantees to/for any of it.  So, move forward with our entire CHARGE Syndrome family tucked in your mind.  Be kind to others and be the person who pauses and treads a little lighter with everyone.  Let our kids inspire you to do better, be better - and live that 'time of our lives', all of us.  

Holiday Concert Performance

Here are two videos featuring Miss Andi Bean in her holiday concert. This chorus is comprised of all the third graders at her school.  

It's A Snap!

One of Andi's bestie's is also going through the BAHA (anchor implant) upgrade.  She got her devices attached and was clapping... stopped and said, "I can hear myself clapping!"  I asked her Mom if I could steal a snapshot - to give Andi's audience a preview of what the abutment, once implanted (early June) will look like...

So, you see the "snap" behind her ear?  This is what the hearing device clips into and honestly, it improves their hearing - as it is a more direct route to the bone....which send the sound vibrations directly to her auditory nerve.  In any case, this is what Andi's future looks like.  I'm so glad that one of her bestie's in the community is going through it too - as it gives us someone to relate to on this solution.  I am excited for Andi's ability to hear better than ever.  Each instance we get closer to it - she definitely hears more. Which makes this all worth it.  It's a snap!

Jabber Jawing from The Mouth Herself

When asked about her day, and how her hearing was different ... I talked Andi into discussing it on a video that I could share with her friends.  Tonight, she learned the expression, "jabber jaw"  I'm not sure she fully gets the negative connotation - but she definitely fits the definition in this video.

So, at 8 years old, Andi is finally hearing on the left side of her head.  That ear has always been considered 'deaf or profound hearing loss' due to her tiny or nonexistent auditory nerve.  But the BAHA processor has been programmed to send sound to the right ear.  Dr. Steve wasn't sure or couldn't promise that she would be able to differentiate that she's hearing on the left side, but she says she can.  It's amazing what technology advancements have done for her, and how much her hearing has improved in six short months using the newer technology.  If it felt more appropriate, I would've given Dr. Torino (ENT/surgeon) and Dr. Steve (Audiologist) the biggest hugs ever today.  I think Dr. Tornio saw/felt my gratitude when I got all dewy eyed during our debriefing after the surgery.  I haven't felt so relieved and hopeful in a really long time.  Least I didn't come unglued.  I've done that a time or two.  Seriously, you can't even imagine unless you've been through the seven layers of hell, what it's like to have someone work on your child while you sit around with your thumb up your butt (sorry, Dad) in a cold, sterile waiting room trying to do whatever you can not to go to a really dark place.  Want to try on scary?  Have someone manipulating your once medically fragile child with dope while another drills holes in her.  Seriously... I can't imagine you can honestly relate.  Sadly, I feel rather hardened and nearly immune to it - but when I pause and really let it in - holy crap    - the fear alone is enough to strip wallpaper off a wall.  

So, enjoy this snippet from the horses mouth explaining how she is honestly hearing better.  When the implanted 'anchors' (fancy screws) have healed their full six months, she'll go under again for a less invasive procedure to have the abutments attached to that screw.  Then, instead of a snap on a soft band, the snap will be sticking out of her skull.  The upside of that gross description, is that her hearing will improve even more - especially in the higher pitches, because it will be a direct route to the bone.  One thing for those that visit, there's an item in the box, that Dr. Steve taught me how to mimic how Andi hears things.  It sounded very interesting.  

But today, we celebrate another small victory toward improved hearing.  Next stop on the journey will be singing lessons, in lieu of her gymnastics class that we simply can't risk during this six month recovery -- awaiting the bone to surround the anchors & sleeper anchors.  

Lastly, I couldn't be more grateful.  Without these two Dr's and their knowledge, we wouldn't be here today.  They don't know it yet, but Andi bought both of them small gifts at her holiday shopping at school with her tooth fairy money (this girl is loaded, btw.)  And we'll surely send them whatever she purchased for them with a personalized card.  I asked Dr. Steve today after Andi grabbed onto his arm and professed her love, if all his patients were as grateful.  He instantly proclaimed that Andi was in a class by herself.  I honestly believe he has a soft spot in his heart for her.  So grateful for these people helping propel us forward. Always wanting the best for your child, I appreciate having the very best surrounding her.  

Double The BAHA!

Tomorrow will be an exciting day.  We head to see the ENT for a post-op appointment.  I assume it's just a check-up on the healing of the dissolvable stitches. Afterward, we have an appointment with Dr. Steve -- our favorite audiologist, whom effectively started this whole BAHA journey to better hearing.  We'll have to wait around a bit, as our appointment with him is a bit later, but it will surely be worth the wait.  Andi's new hearing devices have arrived.  She'll be moving from the Oticon Ponto that has been a loaner/trial for the past six months - to the Cochlear BAHA.  She will graduate from one device to two, still placed on a soft band (headband).  The left sided one will be programed to send sounds it picks up on the left side, to her right ear that has the ability to process the sound. See, Andi's auditory nerve (nerve 7) on the left side is either absent or really, really small.  This nerve 7 travels through the auditory canal down the left side of the face.  This is why, when Andi is tired - it's often noticeable in the left side of her face -- this nerve also contributes to her facial palsy.  So, if you see her eye isn't as open as the right, or her mouth is a bit droopy on the left... this is all connected to nerve 7.

So... the reason we went with the Cochlear BAHA over the Ponto, is that the BAHA can be programmed with Apple devices.  So, when she's on her iPad, it will be like she's wearing headphones when paired with that apple device via bluetooth. With the ability to tap into newer technology, it is evident that her hearing experience will improve.  It's like at school, when her teacher uses an FM System -- a microphone that is automatically picked-up by her old hearing aid and a direct connection - she's less likely to pick up the surrounding noise - a distraction from what she needs to hear.  The FM didn't jive with her Ponto - but we will work with school and Dr. Steve to make sure she's getting the best possible hearing experience with her new devices.

While we heal another six months and await the bone to surround the screws -- come June, we can work toward the next phase of this permanent hearing solution.  I am hopeful that technology will take Andi's hearing to an absolutely higher level than it leaped even in June when we started this BAHA journey. 

We all want what's best for our children.  But when your child has a diminished sense, or senses - as kid's with CHARGE Syndrome usually have all five senses impacted -- improving one of those senses in the slightest fills us with hope and joy.

So, fingers crossed that this new technology impacts Andi with noticeable improved hearing.  Double the BAHA, double the fun!

Cautiously Optimistic

Recovery yesterday from surgery was as to be expected.  Uncomfortable, trying to master pain management, clingy, whiny, mopey, and overtired.  We sat on the couch together for the majority of the day.  Something I can't remember doing in far too long.  Just sitting and being.  Every time I got up, I had to justify where I was going.  If it was the bathroom, she wanted to come with so she could talk to me. Repeatedly, I had to tell her, 'no sweetie, I'll be right back.'  If I wasn't back soon enough, she'd call out to me.  She mainly wanted to sit right next to me, under the blanket.  And I was quite content with that.  In fact, I think I fell asleep several times while she tinkered through a ridiculous amount of videos on her two different iPads.  By the end of the evening, we both were tuckered and she fell fast asleep as soon as I crawled into bed with her.  She wanted to be close, she wanted to be with someone, she crashed hard.  In the middle of the night, she sat up straight in the bed and proclaimed, "I need water!"   This is not unusual, but it startled me.  I figured it was a good time to redose on the Tylenol, and then I laid there for awhile after wondering if that was a foolish mistake on what is surely an empty stomach.  Luckily, she did just fine.

A few things I'd forgotten about, since it'd been such a long time since we'd done a true surgery.  (I consider ear-tube placement a procedure, more-so than 'surgery!')  That would mean that prior to yesterday, Andi had seven surgeries and two procedures - since those last two (#8 and #9) were ear-tube placements.  In any case, when they took me back to recovery and she was still coming out of anesthesia, I forgot how spastic that can be.  She would have her eyes closed, and then suddenly, open them and sit straight up in the bed.  Her eyes would be open, but it's not like she was really there yet.  It was totally bizarre.  By the 4th or 5th time this happened, she saw me and I got a little wave before she laid back down and closed her eyes again.  She had an IV and all the leads attached to her for the monitor, and she would get all tangled in this mess of cords or wires. Another thing I forgot about was when I first saw her.  I leaned in and kissed her repeatedly.  That's when it hit me -- the smell!  The smell of blood was pungent and it took me back to the early recovery from open heart surgery.  The wave of memories flooded over me - instant transplant to those first few days of serious unknown.  One thing from then that still weirds me out was how cold she was. Her skin was very cold -- although they promised me, her body temperature, what she felt - was normal.  They explained, it had to do with the sedation medicine, but she was fine.  It was so weird though - it was like kissing the cheek of someone in the morgue cooler.  Creepy.  I've never shared the photos from that surgery, because it's one instance I don't want to share.  There were so many leads, wires, connections, pumps, monitors, and doo-hickey's -- it was the scariest and the most awe-inducing experience.

This is just a fraction of what we stared at those first four months of hospital living.  Especially when she was in heart failure, and we constantly watched her high heart rate, coupled with a low O2 reading.  

In any case, Andi had a great night's sleep.  She awoke and proclaimed she felt great.  We laid in bed together and just snuggled and talked.  I signed that it was raining outside.  I gave her the old 'over-the-ear' hearing aid (which we wore yesterday to keep the soft band from hitting her stitches, and we tested to see if she could hear the rain.  She sat up and said she could hear it.  I cringed knowing she could hear more with the Ponto, but I just don't want to push it yet with the stitches.

This morning, she has proclaimed she does not want to take any Tylenol or Ibuprofen.  We put the antibiotic ointment on her stitches.  I took a picture of one side, and then realized after I took it - that I didn't get the full incision ... so I took a picture of the other side.  These are dissolvable stitches.  We are to wait until Monday to wash her hair - so first thing Monday morning, we'll be taking an extra long, extra soapy bath and cleaning this rat's nest of hair.  In the meantime, we're laying low and relaxing.

Lastly, the ENT was able to place two screws on each side.  One of those on each side are what they refer to as a "sleeper" -- it's just inserted into the bone at the same time, so that if 5 years down the road, she hits her head and dislodges the post, they can simply go use the sleeper and not have to go through the whole six month waiting for the bone to grow around the screw.   Smart.  Different parts of the bone were soft, (she said this is due to age, not because she has CHARGE), but she was able to get them all in and she noted which ones would be the best to use.  For Andi, her BAHA's won't be totally symmetrical on her head, because one post will be higher than the other - based on the stronger of the two screw placement.  Luckily, with her long hair - it probably won't even matter.  Even yesterday, when she was whining about her own discomfort - we talked about why we did all this and even she agreed, she wants the best possible opportunity to hear as well as she can.  So, we're on the other side of step 1 in this two-stage process.  To quote something we heard early on in the dark days of unknown, we were then and are again today, cautiously optimistic.

Seems Like Old Times

Carrying Andi while walking the hospital halls on our way to the pre-op waiting room, holy waves of anxiety washed over me.  Hello hospital PTSD, we meet again.  The stomach in the throat.  The feeling like you've had three cups of coffee too much, veins are on fire.  The smell of the hospital.  The PA announcements alerting codes.  The beeps of machines.  Nauseous.  

On the converse of all that negativity, it's the people.  From the admissions front desk greeting us with a smile before the sun has even risen.  The admissions clerk, sharing that her husband has a genetic disease that requires blood draws twice a month, while I sign away on various forms.  To the nurses, one of whom told the other to go to her office and grab Andi one of the special new toys from her shelf -- a red dog plush that Andi named Sunny, then when we opened his collar, it showed he was already named Rover.  So, now she's calling him 'Rover Sunny Miller'.  The anesthesiologist (Bennett or "Dr. B") was awesome.  He offered to play videos on his phone for her while she breathed into his astronaut mask to go to sleep.  He offered "Paw Patrol" and all these various shows that she doesn't watch.  She kept saying no to every offering.  Finally, I admitted, 'she likes to watch 'The Voice' or 'America's Got Talent' -- so he offered to put on AGT and she said, 'no, The Voice!'  He asked, 'who's your favorite coach on The Voice?'  She instantly proclaimed, 'Kelly Clarkson!'  He continued, 'yeah, Kelly's everyone's favorite coach!'  We liked him instantly.  We talked through her history, and he explained what he was planning to do.  We then had her ENT come in and mark her skull with a pen.  She marked where her glasses sit, and she marked where the posts would go.  We also talked through the procedure, the recovery plan, the pain management and antibiotic ointment application schedule.  Lastly, we met the two surgery nurses, one named 'Anna' (An-nah, not like mine Ah-nah!)  I said every time she's called 'Anna' ("Ah-nah!") - it was due to me!

It was a great collection of people, which makes handing your kid over for inserting four metal screws in her skull -- a little easier.  They are doing two on each side - the main post and then a "sleeper" screw on each side - just so if anything ever happens to dislodge one post - there's another screw in the bone to switch to.

She's been in almost two hours, so hopefully, they'll be wrapping up soon.  Once she moves to recovery, her ENT will come meet us here in the waiting area to "debrief" us on how things went. Then, we can go back to be with her while wakes up.  Once she's stable, we can take her home.  That's when Dr. Mom goes into full effect.  I imagine it will be pretty seamless to put that hat back on.  Just like old times!

Twas The Night Before: Surgery #10

Twas the night before surgery #10, when through most of the house -- not a creature was stirring (...shockingly at 8:15 p.m.). Andi's gone to snuggle into hopefully a deep slumber with her Poppa and Ginga.  They came from Alabama to be here for her surgery.  Tomorrow, early, early, early morning - we will jet over to the hospital for a 6 a.m. check-in, surgery will start at 7:30 a.m.   It is scheduled for a 2 hour surgery block.  Recovery can be 1/2 hour - 1 hour for her to wake.  It will be a day of close monitoring, watching, working to manage pain, and get food down her comfortably. I know if there are narcotics used in surgery, the stomach will be slow to wake.  However, for Andi's surgery - they aren't planning to use any heavy narcotics.  Probably just some good ol' fashioned Michael Jackson preferred Propofol.   

IDEA #1:
In a perfect world that wasn't run by the insurance companies and the good ol' fashioned dollar.  It really would behoove the medical community to consider this option:  surgery on the kid - give the parents a Propofol nap instead of sitting in a horribly stale, sterile, uncomfortable chair in a public waiting room while the Dr's do their thing.  Instead, let's give the parents a deep rest - so that when they awake they can perform dance rehearsals for 'This Is It' or simply be the medical parent that isn't totally exhausted with fear, anxiety, and more stress than one face deserves. Instead of 'Haggard, party of 1'  -- perhaps we can reward them with the quick spa experience, minus the spa.  I can't tell you how many of my CHARGE family members would kill for a solid, worry-free nap.  I mean... actually, most people I know would kill for that.  Why can't it be a perk to the torture being bestowed your child.

IDEA #2: 
For those families living in the hospital.  You have rounding Dr's with students (in a teaching hospital like the one we were in) and then you have nurse rounds (depending on the severity of the floor or wing you're in) and you have all these people "rounding" to check on the patients.  Where's the bar cart lady to make "rounds" or even a hospital sponsored happy-hour mingler for parents in the parents lounge?  Every parent on the floor is going through their own personal level of hell... let's commiserate together over a cocktail and do the 'what you in for?' instead of just grunting at one another on the elevator in pure zombie mode?  I mean, it really could be a useful networking tool for people living their different levels of hell... In our four+ months of hospital living, I think we only talked to one other family.  I didn't leave the room much except to go get a coffee at Starbuck's or a fruit/cheese snack. I think I went to the cafeteria twice.  I think I went to the parents lounge (where they had free coffee, water, ice, and a table to chill at) ... twice.  I also went to the kids play area twice.  I was a zombie and my focus was on Andi... but even then - I still suggested the bar cart parent mingler to my nurse friends.

So... ideas aside... I can't help admit that I'm pretty petrified about tomorrow.  I just imagine the Dr. drilling a hole behind each of Andi's ears and I go a little cuckoo.  Another anesthesia, her 10th.  Another procedure... another surgery.  But I think the thing I dread the most is saying goodbye to her before they put her under.  Saying, 'see you on the other side, baby girl!'  The what if's and the what the f's will rule the noggin' - just like they always have.  When she was younger, I mean, like less than four months old... it was easier to let go, and leave her with the anesthesiologist.  I believe it was her 3rd surgery, the Pediatrician's nurse (whom we love) carried her to the pre-surgery room.  But now that she's Andi -- lover of all things music.  Sassy and zesty with a side of sauce -- I think saying our goodbye's tomorrow will be tougher.  

I am glad that Poppa and Ginga are here. It not only makes Andi happy - it soothes some of my nerves. I hope they know their 'showing up' means more to all of us -- not just Andi.

Tomorrow is operation hearing improvement. It's go-time.
Please send your best vibes to our lil' big girl.  (She's prideful about being a "big" girl -- so let's send our BIG GIRL your best energy!)  ... and know that might be vodka in Mommy's sippy cup! Walk a block in my shoes, bitches!  :)

Ready or Not, Here We Come!

Preface:  First rule of web page design for businesses:  put your fricken office hours on your website. *grrrr*

Now that THAT has been said... let's move on.  I emailed Dr. Steve first thing this morning (because their hours weren't on their website) to let him know of the Ponto/Soft Band debacle.  He replied within minutes APOLOGIZING and said he'd be there today until 2, but if he wasn't there to ask for 'so-and-so'.  This was probably one of a few things that has happened to us here in the great state of Georgia where I felt like my old medical Mom.  Just in time for surgery Friday!!!  It reminded me of the days in Portland, where all I had to do was email, page, or go see Dr. Cohen (Andi's Portland Pediatrician) and voila!  shit would get DONE!  Although, I don't hanker for being so entrenched in the medical community anymore, it really serves a medical parent more when the Dr's just trust that you have your shit together.  I mean, I've had them (and many therapists) all say, 'you have NO idea the level of horrible parents that are out there.'  But as someone who has been through and through the system of referrals, specialists, therapists, clinics, and weekly Dr's appointments - when your damn pediatrician and his wonderful nurse Chani, is closer to you than your own best friends... that means your a medical parent.  When you can break down crying in front of them, overwhelmed and having a basic melt-down... it's refreshing to know they genuinely care, and truly want to help... 

Today, reminded me of that.  I blew into the ENT office and basically barfed my long story all over the receptionist.  I never used my last name.  She said, 'Miller's?' and I think I twisted my head to an angle with a smile and said, 'YES!' and she picked up a box that Dr. Steve had left for us in case I came in and he was unavailable.  

Turns out my timing was perfect.  He saw one of his patients back and then came back up front.  I showed him what had happened.  He said, 'hang on a second' and took the Ponto back.  He emerged with the Ponto freed of the clip, and we have a new soft band.  He clipped it all together and said, 'let me just make sure.  When she gets to attach to the anchors, we won't need this anymore!'  He's so excited for Andi and the improvements in her hearing.  He said to send her his best and he looked forward to seeing her again soon!  She's definitely noticed the big difference and this whole exercise might be the buffer to keep her from getting too nervous about the surgery on Friday.

Mentally, I'm about as prepared as I can be.  I confirmed with her ENT today via email that we should refrain from gymnastics for 2-4 weeks, which is fine.  Her anchors solidifying in her bone is far more important than her ability to do a backwards somersault, and we're likely with refrain for the full six weeks if you ask me.

Baby girl is happily reunited with her Ponto and a new soft band.  She is marathon watching clips from the Voice of people singing, one of her favorite things.  Until the show comes on in 20 minutes... love watching how excited she gets... and trust me - she knows all the contestants names.  It's unreal.

So, here we are a few days out and we're truckin' along toward Friday. Ready or not, here we come!

Breaking Before Fixing

They often say in order to move forward, sometimes you need to step backward.  As we approach part one of Andi's BAHA surgery, her soft band Ponto decided to break.  

On the plastic part of the band, normally, there's a metal piece that The Ponto (the hearing device) snaps into.  Looking at the picture, the metal piece has detached from the soft band and is stuck to the Ponto.  The other piece I believe to be a backer to the metal snap on the soft band.  

Can you join me in a chorus of 'you've got to be shitting me!!?'  Seriously.  So... come tomorrow when I should be happily skipping myself back to the office with glee (seriously!), I get to go to the other direction and drop-in at the ENT /Audiologist office and see if they can fix this for us. Meanwhile, Andi's using her over-the-ear hearing aid.  Which, it's funny (in a I'm not laughing sense of the word) -- she totally notices that she doesn't hear nearly as well with it.  When she made the change to the Ponto, I had to show her the difference with a little sound check.  We sat in my car, Sir Valentine, and she sat in the front seat with her Ponto on.  We listened to 1.5 minutes of 'This Is Me' from The Greatest Showman soundtrack.  I had the music cranking, windows up, inside the garage.  After that edition, she pulled the soft band off and put her over-the-ear hearing aid on and we listened to the same 1.5 minutes of the same song, same volume, same setting.  This little experiment showed her the incredible difference in her ability to hear well, clearly, and more sounds than with the old technology.  It really was eye-opening for her.

So, here we are a nauseating five days before surgery, and we will took a step back to the old hearing aid, just prior to starting a permanent journey to better hearing.  

The CHARGE Through The Year Calendar

Five or six years ago, I was debating on how I can contribute to the CHARGE Syndrome education, fundraising and celebrate the kids who fill my heart.  I remember it was a sunny day in Portland, Oregon (a rarity, ...if you ask me) and I went into the ridiculously small upstairs bathroom to give Andi a bath.  I remember the heater vent was making the toilet paper dance and BAM!  It hit me.  I should create a calendar.  Don't ask me how the two are related, ...it's just a memory.

For the previous countless (maybe 13) years, I worked for a publisher representative firm.  My biggest responsibility all year was getting our publisher's calendars into Costco/Sam's/BJ's.  Yes, I was one hand in many making sure that your local Costco was stocked on The Far Side Off-The-Wall, and 25 other licensed  calendars.  It was an awesome job and one I thoroughly enjoyed.  Seeing people clamor for their yearly calendar, and my love of page design, it just seemed a natural fit.  Thus, The CHARGE Through The Year calendar was launched.  I choose 12 of my closest friends in the CHARGE Syndrome community and asked them each if they wanted to submit their child into the calendar.  If so, send me three pictures of their child and write a little diddy about them.  What they like, don't like, things they've mastered and things they are working on.  It was one kid per page.  It was personal and it was awesome.

Only problem with only 12 models... the families and extended families are more likely to buy if their kid is featured.  Therefore, subsequent years have grown.  I believe one year, we had 91 kids participate.  Honestly, I prefer this more simplistic design, as it's personalized, it gives details and it allows the individual to shine.  And good grief, to this day, Laynie is still one little girl who I completely adore.  

In any case, the 2019 edition is almost complete.  I hope to finish it this week and send it off to the printer for instant processing.  I believe pre-orders will cover all the printing costs - so I won't have to cough the money out-of-pocket, which is a big deal. 

Ideally, this would have been completed and printed over two months ago, but my big event just kept me from getting anywhere.  Now that it is complete, I can focus my free-time onto this fundraiser. 

To order your copy:  www.chargecalendar.com

$20., shipping included, and all proceeds will benefit the CHARGE Syndrome Foundation.  

In addition to being a fundraiser for the CHARGE Syndrome Foundation, whom supports the CHARGE Syndrome community, is to educate others on what CHARGE Syndrome is.  I can't tell you how many times the medical community didn't know or asked me to explain it... But in addition to getting just the name 'CHARGE Syndrome' out there, this calendar is ultimately the  celebration of the beautiful children and young adults with CHARGE Syndome. If you could swallow a fraction of understanding of what these different people have gone through, it might make you slow down, pause, and appreciate your own health and wellness -- as well as celebrate the gift of life, and the triumph over obstacles these people have endured and enjoyed.

Lastly, there are a few of our CHARGE Angels included in the calendar.  I think one of my favorite things about the yearly account is the fact that these beautiful children are still included.

So, this is my contribution to awareness and fundraising for the CHARGE Syndrome Foundation.  If you want an incredible collection of glorious smiles, order yourself a copy before they're all gone.  www.chargecalendar.com

Back cover of unused images

Pre-Surgery Anxiety

I'm in a rather thick cloud of denial that Andi's BAHA surgery is less than two weeks away.  When I pause to think about it, my anxiety escalates and I'm instantly thrown back into the dark days of fear and unknown.  

There's only so much denial I can allow, as frankly, after Thanksgiving - it's go time.  At some point I am going to have to deal with all the emotions being shoved down and ignored.  Preferably dealt with before I'm in the waiting room hyperventilating with fear, or in emotional shut-down mode.  The second is more likely.

I recognize I'm keeping myself busy.  Even busier than usual.  Filling my head with any sort of distraction I can find.  When I pause to imagine that this Doctor is basically going to drill two holes in my daughters skull.  I mean, join me in the land of cuckoo, why don't you.  

Yep, fear rules the school when you let that visual in.  This PTSD from our first few years is a feeling I don't think I will ever fully come to terms with.  It changed me.  It broke me.  It fixed me.  It hurt me.  The whole gamut of putting my own life on hold while Dr's tried to save or improve hers.  The sleepless nights of barf-o-rama, leaking g-tube, or the ridiculous amount of appointments, specialists, therapists, feeding clinic, financial death by co-pays.  I mean, is there really any getting over all that we endured?  Unlikely.  I mean, I'm not sitting here harboring a lot of unresolved emotions, but, facing another surgery is bringing back a lot of the anxiety we used to live and breathe.

On top of that.  She's older. She talks.  She knows more. She feels more. She is much more aware.  I think that will make it harder than it was when she was a baby as I didn't really know her yet.  But as she's older, I am even more afraid because she is so much more a part of everything I am.  She is my mini-me as evidenced by the jokes she tried to tell me at lunch yesterday.  Like me, she just wants to make people laugh.  She truly is an amazing little girl.  I'm so proud of her. As her Mom, all I want to do is make sure she's okay. Something broken, I want to fix it.  Something hurts, I want to heal it.  Someone does her wrong, good luck prying me off them.

13 days until we check-in at 6 a.m.  

I am afraid.  I am worried.  I am letting the anxiety percolate and bubble up much like her acid reflux that struck her again today.  So, if we all seem a little edgier, crazier, or even slightly distant -- here's a solid reason why... we've got some serious pre-surgery anxiety going on 'round here.

Andi Rocks Queen

Andi strikes again.  Her 3rd school talent show participation and she nails it again.  

She wasn't scared.  She didn't do all her Freddie Mercury moves, but the ones she did incorporate were awesome!  This kid is just all sorts of amazing.

The Value Of Wit, Charm and Madea

You may not believe it, but I used to be incredibly shy.  I mean, it wasn't even that long ago where I struggled to make eye contact, had trouble speaking up, and was ruled by fear.  Fear of what, ... I have no idea.  Somewhere in Andi's dark days, or the light shortly after, I found my voice.  My voice has only increased as the year's have gone on.  Sometimes it might be too loud, but it's usually in effort of making people laugh.  But in those days when I was told that I had to be Andi's advocate and fight for her, her care, I signed on and assumed the role -- because I had to.  I can't tell you how far up her pediatrician's ass I had to park myself about her leaky g-tube, but I feel I could almost touch his esophagus.  (Sorry Dad, I think it's funny, and we both know it's true!)  In any case, nothing makes me more vocal and tempt my lioness roar when I hear a little shit is picking on my girl.  Oh yeah, today's after-school care report was that there was an incident where this little shit was making fun of Andi, and her lil' cohort joined in on the taunting. Apparently, they kept telling Andi she was annoying.  I've asked Andi repeatedly if they said anything else - but she said no.  I'm pleased to report that my kid did not Madea those lil' a-holes like I would have wanted her to - but told them to stop.  When they continued, she told the teacher.  

I applaud her and told her she did everything right.  However, this is the age where kids start to notice differences, and I worry that any taunting will just get worse. Kids are mean, and unchecked, they can be downright nasty.  I know because I was mean to one girl in grade-school, Shelley. A lot of us were.  I still don't know why, but there's no excuse for it.  I put my apologies out in the universe a few times now, but I can't give Shelley back her innocence.  I can't undo any damage that caused her, if any.  Perhaps this is the lesson coming full circle, karma slapping me upside the head. Even though times have changed, there's no undo button on mean words.  No take-back's.  Words hurt.  And I worry what words will do to Andi -- how they will effect her.  I know all I can do is continue to arm her with her personality, a quick wit, and like my Mom taught me -- how to say bullshit with a smile.  

It's only the beginning.  Actually, I think this is the 2nd time it has happened.  I believe karate classes are forthcoming, because in addition to the wit and charm, she will learn to Madea those lil' f'er's.

The Giggles Of Friendship

For the past few years, we've noticed that Andi doesn't have playdates like most kids.  Part of that is/was due to her busy therapy schedule, but where were the invitations?  Andi hasn't had one friend that's called her, invited her to do something, or just hang out.  We wanted to get her into Girl Scouts or Brownies, thinking that would be a great way to foster friendships, but there wasn't a chapter at her school.  Her teachers report that everyone likes Andi at the entire school.  They all know who she is and most of them look out for her.  So, her Dad and I have been smelling our own arm pits wondering, 'is it us? do we stink!?' And then we scratch our heads and wonder why she isn't experiencing this childhood rite of passage, friendship.  Moving into this house, like I've written before, one of our many motivations for getting a house with a pool, was to encourage social get-togethers, not just for us - but for Andi too.  I know when I was a kid, we'd always hang out at the kid's house with a pool when the club was closed. This is what we hoped for with Andi.  She had her first friend over to swim a few weeks ago, and next thing I know, Andi tells me on the way home from After-School Care that she invited her over for a sleepover and she said yes! 

All week, Andi was counting down the days until her friend came over for a sleepover.  She'd constantly ask me, 'what are we going to do?' and not only repeat the questions rolling around through her mind, but she was seriously mapping it out in her head.  The morning that her friend was to come over, she awoke giddy.  She was in such a good mood, so excited.  She was literally floating around the house with excitement.  It was pretty dang cute.

She was so excited, I'm actually surprised she didn't give herself a belly ache!  We worked on setting up her room, bringing her old twin mattress and putting it on the floor next to her bed.  She helped me make up her friends bed.  She just buzzed around the house with this wonderful energy.

Her friend arrived and we 'shot-the-sh*t' with her parents, who are pretty dang cool.  When they left, I ordered a pizza via Uber-Eats, and they went downstairs to enjoy a movie on the big TV while we awaited the pizza. We never did get to see The Greatest Showman for the 43rd time, but whatever.  After pizza, we played Sleepover MadLibs, ate some homemade ice cream, played Kids On Stage (Charades), and then had a dance party.  By this time, it was 10:00 and the girls were hyper, but exhausted. They got ready for bed and once I got Andi to "be a big girl" and leave the lights off for the night, just having a night-light on -- I closed the door and that was the last I heard from them.  They were out.  By 6 a.m., they stirred.  By 6:30, her friend kept whispering Andi questions, 'are you awake?', 'do you want to go wake up your parents?' I don't even remember what else I heard, because I was saying in my own head, 'oh honey, she can't hear you without her hearing aid on...' and that just made me sad for Andi. It made me realize that we probably need to start keeping her hearing aid in her room.  I've noticed that when I wake her in the mornings, and put on her hearing aid and music, she wakes much better and faster than without.  It's hard to imagine how scary that must be for her not to be able to hear, how frustrating at times, how exhausting.  But then I think, wow - how peaceful it must be at times too. I want to say she doesn't know any different, but she does, because she experiences it all day when her hearing aid is on. But I know, Andi will do what she does... she'll adapt, divide and conquer.  

So, we're up at 6:30 a.m. and by 6:35, I'm getting demands for the chocolate chip pancakes I mentioned the night before.  I was able to detour the short-order cook role for a cup of coffee, but once that was gone, they were on me again.... 'when we going to eat pancakes?'  The pancakes were a big hit, and that turned into playing.  They played with play dough, coloring, then they played 'school' and took turns being the teacher.  They played so well together, it was so much fun to watch.  Hearts flew out of my dewy eyes, as she finally had a typical kid experience that we've been waiting for what seems like forever to occur.  Her parents brought donuts, and we sat around chatting while the kids played some more.  Neither of them wanted to stop, but when they left, we marked two more occasions on our calendars for our next get togethers. I know Andi will be a good friend to anyone and everyone she deems worthy.  I am just absolutely thrilled that she's finally got someone who wants to hang out and play.  Most of my childhood memories revolve around the many people from the neighborhood I hung with nearly every day.  All my best memories include these people.  So, I'm hopeful that Andi will have such memories of her own that she can start creating. In the meantime, the sound of little girls giggling are still echoing this evening.  The start of a glorious new chapter.

Chatter Box Bean

Every night I put Andi to bed, we have this routine of making sure everything is in its place, give a dozen 'a hug & a kiss' - a few I love you ASL signs and good night's.  Once I exit the room and shut the door, she starts talking.  And I mean, TALKING.  "Hi! How are you? How was your day?"  She rattles one side of a conversation that lasts a good 1/2 hour. She runs through her whole day. Conversations she's had.  Gives instructions to her audience, like she has heard throughout the day.  I think it's her way of processing, categorizing her day - and one way she can remember so much more than most.  However, a part of me wonders if she's chatting up a storm with our ancestors, ala the movie Heart and Souls (staring Robert Downey Jr.)  She is just talking and talking, and this happens every single night.  
* Product of an only child? 
* Product of a spiritual nature? 
* Crazy ass kid processing her day?  
Whatever the reason, I love hearing her chatter her thoughts. It's insightful to what she doesn't offer during the evening hours.  Right now she's insistent about "not taking off our shoes" - something I had to tell her in the store earlier today.  Now she's talking about Kelly.  I'm guessing it's my friend, but it could be Kelly Clarkson from the Voice.  I can't tell.  It's comical, adorable and I savor these instances where I can slow down and just listen. My baby girl isn't always going to talk to me... so, right now, I just need to enjoy the chatter box Bean.

Mantra / Vision

I've said this a time or ten, but, these past 8 years I've repeatedly heard, "I don't know how you do it,  you're so strong!"  And I usually blush and say something like 'I'm no stronger than anyone else!  You do what you have to do."  But if you really want to see me fall apart, tell me there is something more to follow on my kid.  Tell me there's something else wrong.  After 8 years of being followed, tell me that you've discovered something new.  Yeah, then let's talk about how strong I am.  I'm no different than any one of you.  I might hide it better.  I may be sarcastic, even make jokes about other things, but it's all a distraction from what's eating me. At one point, I had someone assess me and they said in addition to all my glory that perhaps a part of me seemed a bit sad.  I didn't disclose anything about anything and I found this to be intriguing as I've always been the life of the party, or close to it.  

Again, want to watch me shrivel and doubt... tell me we need to be seen by a specialist more frequently to capture data.

Today, Andi, at 8 years of age, was diagnosed as having a coloboma.  What's a coloboma?  Want your head to spin (no offense to the Dr's studying this shit, but seriously... plain English - is it REALLY that difficult?!)  

https://www.chargesyndrome.org/factsheet-about-coloboma-of-the-eye/

I'd offer up other links, but I find myself getting rather irritated with the internet, and even vodka is not helping that.

Visit the CHARGE Syndrome Foundation page - I'm sure there's a ton of info. there that even to this day (no offense) I haven't studied.  Flashback:  when Andi was clinically diagnosed at 4 or 5 days old in the NICU, before being transferred to OHSU, Cory went home and spent about 8 hours reading everything he could about CHARGE Syndrome.  He came back to the hospital nearly hyperventilating to tell me whatever I do, don't read about it on the internet.  I think he actually forbade me to get online to do any sort of reading because he knew it'd freak me the f- out.  Which honestly, it would've as I was a shell of a human being on pain med's for a c-section, and just shell shocked from the surprise of all of Andi's woe's... especially when I was at the Dr's office so regularly.  Shell shocked... that's a great description.

Getting back to today... why didn't they see this prior to today?  First of all, when she was in the NICU looking for coloboma's - they wouldn't have had such a large vision of the areas around the eye, just a fraction.  Why didn't we see this when she was dilated a year or so ago?  Because we didn't utilize the Optos machine which can take deeper, better images behind the eye.  So, last week, we did her yearly exam.  Her eyesight deteriorated a slight .25% but improved in certain regard.  In that appointment, I agreed to pay extra for the Optos machine, which isn't covered by insurance (f-u insurance companies, times infinity - because if this could've been found earlier...and I didn't feel I had the funds to support the extra cost...  f-u.  You worthless co........ uhm, never mind.)   Anyhow, here are some pictures from today's appointment.  

First, grumplestilskin that didn't want to get her eye's dilated. Secondly, my big pupiled girl with her 'eye-dr shades' on...  She is unchanged.  It's Mom that needs to find her strength, resolve and sorry Dad, "balls o' steel!"  Tomorrow morning's kickboxing workout will probably be epic.  Enter therapy of a different kind.  'Maybe a little sad' is not something I identify with.  Like I've taught Andi to chant, our mantra is "I'm strong, I'm brave, and no one is going to push me around!" 

Surgery #10 (from August 2018)

*Accidently posted this on my other blog.*

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!*  :)  

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.