4th Birthday Photo Session

4th Birthday Photo Session

Friday, November 30, 2018

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!

Thursday, November 29, 2018

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!  :)

Monday, November 26, 2018

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!

Sunday, November 25, 2018

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.  

Saturday, November 24, 2018

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

Saturday, November 17, 2018

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.

Friday, November 16, 2018

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.