4th Birthday Photo Session

4th Birthday Photo Session

Tuesday, December 18, 2018

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.  

Saturday, December 15, 2018

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!

Monday, December 10, 2018

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.  

Sunday, December 9, 2018

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!

Saturday, December 1, 2018

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.

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!  :)