4th Birthday Photo Session

4th Birthday Photo Session

Thursday, December 27, 2018

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!  

Sunday, December 23, 2018

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

Thursday, December 20, 2018

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:


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.  

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.