4th Birthday Photo Session

4th Birthday Photo Session

Thursday, May 30, 2019

BAHA -- The Grande Finale

Last June, we went to see Dr. Steve for Andi's yearly audiogram.  After completing the test, he sat down with me and said he believed he could get Andi hearing a whole lot better than she currently was.  Intrigued, I listened.  Andi has worn an over the ear hearing aid since she was five months old.  Sound would be amplified by the hearing aid and travel through her ear, which was often congested - further diminishing quality sound.  Dr. Steve said, at 8 years old, Andi would definitely benefit from switching from a over-the-ear hearing aid, to a BAHA -- a Bone Anchored Hearing Aid.  These were both on the right side.  Her left ear is considered deaf or profound hearing loss.

He did a hearing comparison between the two devices - putting the BAHA on a soft band (headband).  The audiogram was all the proof we needed.  Andi left with a loaner BAHA on the head band and when we walked out of the office building, she stopped.  She questioned, 'what's that?'  I stopped and listened.  I asked her, 'do you mean the bird singing?' She replied, 'Yes!' So I asked pointedly, you haven't heard that before?  'No.'  Her eyes lit up and she was giddy.  I cried most of the way home.  It's amazing what we all take for granted, and yet, kids like Andi remind us to pause and savor what we have -- because she does not have it.  That day was simply joyful.

When we checked in with Dr. Steve again, he said he believed he could make her hear even better. At this appointment, we went from having a processor on just the right side, to putting a processor on both sides of her head.  With technology, they can program the sounds captured on the deaf side, and send it to the ear that hears.  Thus, possibly giving her a 360 hearing experience.  Andi noticed the change, and for the first time in her life, started hearing things coming from her left side.

At the end of November, we went in for part one of the BAHA surgery.  Dr. Torino drilled two screws into the bone behind both ears.  One screw holds a post, the other is a sleeper screw in case something happens to the other screw. We would wait six months to heal from this, enabling the bone to solidify around the screw. 

In mid-May 2019, we went back in to put the abutment on each post.  The abutment is the 'snap' that sticks out of her head - to which the processor clicks into.

So, yesterday, Andi met with Dr. Steve to have her BAHA processors attached to her new abutments! 

Attaching to abutments:

Andi's commentary:

Andi will 'rock you!'

Booth testing:

The audiogram showed improvement in overall hearing.  Below is audiogram comparison.  On the left is the over-the-ear hearing aid (A) -vs- the single BAHA processor on the soft band (B).  On the right, was yesterday's audiogram with the dual BAHA processors clipped directly to the abutments.

Her audiogram showed an improvement, but he said that she will notice the difference more than her audiogram will show.

But, this is Andi... she wanted to tell you herself:

Dad, I hope you enjoy hearing her use of 'Whatevah!'  I have the feeling that is a word I will likely suffer for quite some time. 

Andi Turns 9!

While we celebrate the birth month (2 weeks before, 2 weeks after the actual birthday) we leave you with this video to enjoy a look back on the incredible year she has enjoyed!

Thursday, May 16, 2019

Surgery #11 ... but who's counting?

This morning marks yet another sarcastic celebration, surgery #11.  Oh yeah, cuz when I was pregnant, I just couldn't wait to hand over my kid to not just the surgeon, but the anesthesiologist, eleven separate times.  Oh yeah, it's every parent's dream come true.

Sarcasm aside, I've been awake well before the rooster.  Not out of fear, but the horrid kink in my neck.  Must have been that 15 minutes of working-out I did two whole days ago.  Won't be doing THAT again anytime soon.  *kidding!*  But yeah, surgery days tend to conjure all the emotions and fears that parents like me choke down day after day, stifle with food & beverage, or keep at bay with a series of bad jokes.  Ok, not all the jokes are bad -- but, whatever.  We all have our ways of coping. 

Last night, I stole this picture from someone on Facebook. 

Reading this really resonated with me and our experience.  In fact, I believe I wrote about it in this blog.  Yes, third post in August 2010:  http://amazingandi.blogspot.com/2010/08/kaiser-permanente-rent-baby-program.html  
This is so true.  The real work started when I got home because I had no help.  I had to learn how to place the OG tube, (tube that went down her mouth directly into her stomach -- every 2.5 - 3 hours)... I had to learn how to push her medicines through the OG tube, and later, the G-Tube.  How to take care of a leaking g-tube site.  How to know when her breathing was too fast or too labored - because her diuretic dosages were off.  I remember one of our first days home alone from the hospital like it was yesterday.  Her breathing seemed more labored, and I didn't yet know, nor trust, my gut -- my parent's intuition.  I remember waiting until a respectable hour, either 6 or 7 a.m. to page her pediatrician -- who told me to call day or night, but... I was trying to be considerate... little did I know he was probably already at the hospital making rounds to check on the kids he saw.  When I got him on the phone he said, 'without a doubt, if you suspect something is different... please take her to the ER.  Now.'  So - that we did.  Turns out her diuretic dose was off.  It was a constant battle of "too wet" or "too dry" -- the diuretics helping with the battle between her heart defect, and the pressure that was putting on her lungs.  Blue blood -vs- red blood.  Oh my -- I do not miss those days.
In any case, the picture above speaks volumes to me. The NICU was the easy part.  The rest of the year, was easily the toughest year I've ever endured.  Fast forward to almost our ninth year here... and Andi is thriving.  She's been discharged from PT at school, reduced to a 1/2 hour a month "consult" of OT at school. We had her evaluated for outside OT therapy this week and they deemed her not needing this service anymore.  We've graduated, and writing that fills my throat with emotion that I choke down.  We have been in some sort of therapy since October 2010.  Yes, her early intervention started when she was home from the hospital - post heart surgery.   In two weeks, her Medicaid coverage through the Katie Beckett Deeming Waiver - (secondary insurance that covered easily $1200. a month of therapy services) - will cease to cover her, because she no longer receives 5 hours of therapy services a week.  To all the people that don't want to support social service programs, state provided assistance -- kids like Andi are the gleaming beacon of light that programs like this help.  It's because of the past four years of outside of school services she has been afforded through this program, that helped get her here.  There were many hands at work to help Andi get to where she is.  I often hear, it's because of you - and what great parents you are... and I beg to differ...  I mean, yeah, I'm fabulous and all *insert Cher hair toss here*, but it's really the many hands that have helped guide, steer, strengthen, invested, and taught Andi -- that have got her to this level.  In addition to the Princess herself -- she herself has made it all of it happen.  Without her work, perseverance, strength and downright stubbornness -- none of the others would have such an effect.  So, I yet again say thank you to the many hands that have helped lead us here.  And, to the Georgia Katie Beckett Deeming Waiver program, I say, "thank you, but you are no longer needed!"  Honestly, without that program, Andi would not have had 3 hours of therapy a week to help propel her to her current level of awesomeness.  

So, back to today... surgery #11.  A fairly "minor procedure" but none-the-less, a procedure.  We are going in to have the abutments attached to her BAHA posts.  So, end of November last year, her ENT surgeon, Dr. Torino, put the screws/posts into her skull, behind both ears.  We've waited the 6 months to put in the second part - which is the abutment.  The 'snap' that will stick out of her head - so she can attach her processors to, once the skin heals.  So, when we get there (a few weeks) -- she will lose the ugly tan headband that her processors attach to - and she'll start connecting those directly to her skull. It is likely that her hearing at the higher octaves will improve, due to the direct connection.  Being a girl, she'll easily be able to hide her processors under her hair.  Hopefully, technology will continue to advance, and those processors will grow smaller and smaller.  The process of today's surgery is that she will be put under, and Dr. Torino will press on her skull firmly to locate the posts. Once she determines best location, she will basically take something like a paper hole punch (but for the skin) and open the area to access the post, and screw in the abutment.  Ooh, you're not eating ... are you?!  Sorry - I'm numb to all this shizzle.  She won't be able to wash her hair for a few days, and won't be able to put her head under water in the pool for a few weeks - while we let the skin heal around the abutments. 

So... it's a quick, "minor" procedure - because putting the posts in was the tough part of BAHA (bone-anchored hearing aid)... but, it is still a surgery.   So, put out your good vibes for our lil' Andi Bean - and let's all energize this to remain 'a minor procedure.'  

Sunday, May 12, 2019

The Village

Here it is Mother's Day 2019, and I'm saddled with the question, 'What Does Mother's Day Mean To Me?' As we all get older, and we lose people close to us, these Hallmark Holiday's seem to shift meaning.  For me, I lost my Mom less than two months before my wedding in 2005.  While, I'm not that sharp to do the math, I believe that was a long ass time ago.  It doesn't matter.  There isn't a day where I don't think of her, nor catch a glimpse of her in my personality.  She's with me, no matter where I go.  She built into Andi, and Andi never met her.  Regardless, it's fun to watch.  I see my step-Mom in Andi, and am thankful for that.  I see my step-sister in Andi, and am thankful for that.  Our young seem to be comprised of the people they encounter, those people shape them to become the people they are.  In turn, I can hear one of my best girlfriend's say, 'I am not necessarily a product of my family, but a product of the people I've chosen to surround myself by.'  Powerful.

In turn, these "holiday's" force me to pause and remember all the many, many things, many people, that it took us to get us where we are today.  Words like, "I don't know how you do it" flow over my ears on days like this, because I know that none of this was due to one person (well, minus her genius heart surgeon that "couldn't have done a better job!" (current cardiologist)...)  It took a village.  It took people not only supporting Andi, but those that rallied around me.  I think back to those dark days, where Kajsa - Andi's early intervention OT, was essentially my best friend.  Keeping not only Andi's torticollis stretched, but, my sanity in-tact.  Those in-home visits were crucial to home-bound people like us. 

But, again, on days like this - I don't necessarily stop to think of me.  I think of so many of my Mom friends who have lost their babies, their children, who - on days like today are hurting.  In our CHARGE community, it's too much.  So many of these Mom's are the ones my mind gravitates toward on days like today.  So, on that note, I tip my hat to you Momma. You have my heart.  Your children are on my mind.

And to my lady-friends who don't have children... you actually are a major part of it all.  You're a part of a village of women supporting others.  So, keep in mind - and I have specific ladies in mind here...  You were a major part of my village supporting me in crisis... so yes, you too, are celebrated.  With my whole heart, I thank you!

Parenthood isn't one person.  Motherhood isn't one person.  It's an army surrounding the child, the mother, the father, the entire family unit.  In good times, and in bad.  It's the village that holds them all up.  

And on that note, Andi's part two of her BAHA will be this Thursday.  Luckily, Poppa and Ginga will be coming to join me as we sit through a relatively 'easy' procedure.  However, it being her 11th, it still produces a level of PTSD for the previous procedures or surgeries that maybe weren't so easy.  It's again, a part of the village that comes to stabilize the unit.  That is what I celebrate on days like today.