4th Birthday Photo Session

4th Birthday Photo Session

Tuesday, October 23, 2018

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.

Sunday, October 14, 2018

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.

Monday, October 8, 2018

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.

Thursday, October 4, 2018

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?!)  


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!*  :)