4th Birthday Photo Session

4th Birthday Photo Session

Wednesday, June 20, 2018

Floating Hearts O' Gratitude

Today we saw Andi's hunky cardiologist.  Sorry, but he is easy on the eyes!  Complex kids Mom's feel me on this right?!  It had been two years since we checked her repaired heart.  Again, Andi had a Complete AV Canal.  She introduced herself with gusto and they were instantly smitten.  The entire staff started calling her "Princess Andi!"  She breezed through the EKG and then the Echo, and then we reviewed the findings with her cardiologist.  He said, "...last time, I deemed it mild-to-moderate leak on the one valve, but given today's findings I question why I even said that.  It'd definitely just a mild leak and I couldn't be more thrilled."  The other valve is a minimal leak.  When she lays down, he can hear a slight murmur, but when she stands and clenches her fists, he can't hear it at all.

Basically, her heart is as good as he could hope for.  The more activity she wants to do, the better.  He said, 'see you again in two years!'  Then he said Andi wins the prize for cutest glasses and coolest shoes.  So she promptly asked, something along the lines of 'what do I get?!' like all good princesses should.  He said he didn't have any prizes, but two thumbs up.  She wasn't sold.  In fact, I think she felt ... undervalued.  So she asked, 'do you have any stickers?' to which he gleamed, 'why, yes, we do have stickers!'  Then he asked if she liked granola bars.  'Yes!'  So, Dr. Hunky-pants retrieved the granola bar out of his own lunch as a reward for Princess Andi.  Food and stickers win.

So, we have floating hearts of gratitude above our heads today.  Grateful for the stability of her repaired heart. We got really, really lucky and there are moments throughout the year where I just pause and think about Dr. Langley and his incredible team that repaired her complex heart defect.  Sending floating hearts of gratitude and respect to them as well. 





Friday, June 8, 2018

Heavy Hearted Response

Today, they held the service for Noah Ashton.  Noah was a 6 year old with CHARGE Syndrome, whom we've known nearly his whole six years. Noah passed away in his sleep, for reasons unknown. The service was streamed online for consumption.  I was at work, so I chose not to login as no one needs to see me fall apart at work.  Our community has worked to rally around the family, and our profile pictures are all the same, and we posted photos saying 'CHARGE On Noah!'  It is one of the few ways we can embrace the family from afar, to let them know that we are there with them, trying to hold them up through this unimaginable time. 

Noah has been in every CHARGE Through The Year Calendar I've produced.  A gorgeous boy with the sweetest demeanor, and devilish look in his eye.  He has been a part of this path for as long as I can remember being on it.  I just can't even believe he (and Asher, and Kane) is (are) gone!  My heart hurts.

Here's one of Andi's photos:



An article in their local paper.
Father's 'shooting star' lived his best life > Medicine Hat News


Go Fund Me Page To Support The Ashton Family:
Go Fund Me Page To Support The Ashton Family


Our community has endured 8 losses in 8 weeks.  Three of them I followed religiously, for years.  These kids have been a part of my every day.  I send all families my love, but, I have to single out my closest three.  Ladies, I love you with my whole heart and I wish I could say or do something to take a smidgen of this pain away.  Tell you this, you want to escape and come hide out here for a spell, I will find a way to make that happen.  Just give me the word!  Seriously.  

Other than donating, how can you help?

Honestly, give blood.  I gave a pint today and lost a pound finally... I mean, there is an upside!!!  I was dehydrated, so her attempt in my left arm had a vein disappear.  So, although I look like a junkie with multiple holes in my arms, I felt that was the best way I could honor our friends.  

Treat yourself, treat others with kindness.  Give back. Donate. Donating your time is the most personal form of charity, as although we all can earn more money, we can't earn more time.  Maybe treat yourself better than you have been (cough, cough, Anna!)   These kids struggled through so much just to survive.  Cherish your health. Cherish your wellness.  Support those around you by being mindful of your footprint on everyone on the planet.  From that jackass on the freeway, to that extra-chatty lady in Subway who was probably just looking for someone to converse with.  Be good to one another.  And spread the word of CHARGE Syndrome.  It's not known enough... and awareness is one way we can help future families, future diagnosis, future Dr's and Nurses.  

Charge Syndrome Foundation  (Link To Their Website)

Charge Syndrome is a recognized pattern of genetic birth defects.  At one of the conferences we attended, it was explained that essentially, when the body was getting put together - the directions were lost.  So, with the road map lost, there are "issues"...  hearts with holes in them, or valves that don't quite work right.  Eyes with vision issues, mainly coloboma's.  Ears that don't quite hear.  Noses that need to be opened because the air-passage way was clogged with bone/tissue (choanal atresia).  Lungs that are in chronic attack.  I can go on and on...   Again, CHARGE is an acronym for potential issues.  From the CHARGE Syndrome Foundation website:

The letters in CHARGE stand for: Coloboma of the eye, Heart defects, Atresia of the choanae, Restriction of growth and development, and Ear abnormalities and deafness. Those features are no longer used in making a diagnosis of CHARGE syndrome, but we’re not changing the name.

Give to the Foundation that supports families... that's huge. My friends started an amazing non-profit in honor of their son and they work tirelessly to support families in the CHARGE Syndrome community.  They have sent dozens of families to the past two conferences, which honestly is like going to Disneyland for us. Going to hang out with your tribe for a long weekend is probably better than Disneyland.  It's like one giant family reunion of people who just 'get it!'  CHARGE For Connor is another great way to support our community.  http://www.chargeforconnor.org

Lastly, did you remember that you can order your amazon.com stuff through a special website and it will donate a portion of your purchases to a charity of your choice?

www.smile.amazon.com
Select 'CHARGE Syndrome Foundation' or "CHARGE For Connor"

Every little bit of funding and awareness can help us all.

Again, my love to the entire CHARGE Syndrome Community, especially my girls.... Lisa, Laura and Alicia.  Love you all.

Wednesday, June 6, 2018

BAHA! (...and I don't mean taco's!)

At Andi's overdue ENT / Audiology appointment this past April, we met her new audiologist, Dr. Steve.  Dr. Steve tested Andi's hearing using her conventional 'over-the-ear' hearing aid that's she's been saddled with since she was 4 or 5 months old.  Just to point out, and over-the-ear hearing aid transmits sound through the ear, all the fluid, wax and seasonal allergy congestion she experiences... and actually all that diminishes the reception of sound for her.  Well, according to Dr. Steve, given Andi's middle ear hearing loss, the bone conduction hearing aid would better suit Andi's hearing loss needs, actually improve her hearing.  (Keep in mind, Andi is absent or has an incredibly small nerve on her left ear - so that ear remains unused, unaided.)

Bone conduction hearing devices. ... A bone conduction hearing device is an alternative to a regular hearing aid for those with problems in their outer or middle ears. It transfers sound by bonevibration directly to the cochlea, bypassing the outer and the middle ear.

Today, we met with Dr. Steve again with her Dad in tow, and we discussed what the bone conduction hearing aid using the soft band (headband to hold it in place) is, does, and how he thinks it will help her hear better.  After programming the device and putting it on, Andi went into the hearing booth.  He tested her using the bone conduction hearing aid and then again with her typical hearing aid.  The results were pretty amazing.  Now, I get most people aren't equipped to read audiograms like a CHARGE parent  (...just a perk, don't be jealous!!!)   

A = With the Typical Hearing Aid
B = With the Bone Conduction Hearing Aid
HINT:  the higher on the chart you score, the better you can hear.

So, we're doing a Bone Conduction Hearing Aid trial for 2.5 weeks, then we'll go see Dr. Steve again to discuss our experience.  Do we see noticeable improvement?  Do we want to stay with this device?  Do we want to move to the BAHA?  What's a BAHA?  A BAHA is a Bone Anchored Hearing Aid.  That means that they would surgically implant an anchor (basically a screw that send the sound directly into the nerve) and we would attach the device (after several months of healing - allowing the skin/bone to grow around what is basically a screw in her skull)... and if we were to do this, her hearing at the higher pitches would improve even more because it would have a more-direct-line of sound.  

RISKS:  Haven't spoken with the ENT/surgeon yet, but there are risks.  And what I've gathered from my fellow CHARGE families, main concern is an infection that will never go away.  The surgery is outpatient, and almost always covered by insurance.  Go figure, they won't cover a hearing aid, but they will a surgery?!  *insert eye roll here!*  But, we'd have to pay our out of pocket/deductible... but whatever.  The healing time is several months.  I imagine there would be some initial pain management to address.  Other than that - I don't know yet.  But let me tell you this.  Andi loves music.  I mean, she watches videos on You Tube all day long on her iPad.  She currently loves watching The Voice and anything that has to do with music.  Music helps her with speech, enunciation, listening, vocabulary -- good and bad... and it is really a motivator for her.  Today, as we left the ENT/Audiologist office for Day 3 of Summer Camp.  First, we stopped and listened in the parking lot. 

Me:  "Andi, do you hear that bird chirping?"
Andi:  "yes!"

Me:  "Andi, do you hear that car horn honking?"
Andi:  (almost repulsed)  "yes!"

Me:  "Andi, do you hear that sound that sounds like a motor running?"  (I honestly don't remember what it was...maybe a lawn mower?)
Andi:  "uhm, what's a motor?"
... parent fail... I  couldn't figure out how to explain it.  DOH!

In the car, before we even started our drive, I started crying.  I had to explain to her how excited I was for her and why.  To improve her hearing will give her such a better chance in this world.  There have been so many times where she just puts her hands up in surrender and says, 'Mom, I can't hear them." (the kids that won't play with her).  I was so overcome by the potential of improvement for her that I couldn't help but cry.  We put on some of her favorite tunes.  This Is Me from The Greatest Showman.  She absolutely lit up hearing more of the song than ever before. Then we went to our ol' Moana favorite, then onto Try Everything from Shakira... I honestly don't know what Disney movie that's from...  oops.

The difference was instantly noticeable.  

When I picked her up from Summer Camp, her device was in the completely wrong position.  I tried to reposition it, but there's a bit of a learning curve for me too.  All the way home I heard, 'What did you say?!'  It was gut-wrentching... but we've since repositioned it and she's learning about it, just as I am...  We'll see how this two & a half week trial goes, but one thing has already been reported, Dr. Steve - we believe you're genius.  Can't believe it's taken us 8 years to get to this level of hearing.  Failure on previous audiologists, if you ask me.

Will continue to report... wish her luck!    

Monday, June 4, 2018

FEAR

Fear is a jacked-up emotion.  Since the sudden passing of our last friend, Messenger is aflutter with different groups of friends from the CHARGE Syndrome community and we're all struggling with our fear!  The Mom of the child who passed is trying to comfort their other children who are now afraid to sleep because they fear they might not wake up like their brother.  Grief is a process.  Fear is a jacked-up emotion.

I myself have been up since 3 a.m. dealing with our too-usual tummy ache.  We moved to the couch, where I sleep far too often - and neither of us could get back to sleep.  I had Andi propped up on pillows and she was gurgling the joys of reflux.  Then I sat up on the couch and had her sit up with me.  That worked to get her to sleep but as soon as I moved to shift a leg that had fallen asleep, or grabbed my phone, she'd wake.  She crawled off me and back to the pillow a few times, and it wasn't until me and my cell phone left the room that she actually fell back to sleep. 

So, I went on with my routine and went to ride my bike. That's my time and I'm trying to be better about putting myself first.  But the entire time I was upstairs, and she was downstairs on the couch, unsupervised, I was horribly afraid. Real fears like, 'what if she refluxes and aspirates?"  These are real possibilities and one that a CHARGE parent normally tackles, but it is more pronounced in the days since we've lost so many.  From our Facebook group, I've been told that we have lost seven children with CHARGE Syndrome in the past seven weeks.  SEVEN.  That's insane.  Seven lives gone far too soon. It's no wonder that we're all sitting here holding on tighter, stifled by the grasp of fear.  This is our reality.

Friday, June 1, 2018

BROKEN

No one asks to be a part of this life as a parent of a kid with CHARGE Syndrome.  No one willingly fully raises their hand (...well, ...actually, there have been a few amazing foster/adoptive parents) and says, 'yes, sign me up for this whirlwind roller coaster.  I will tackle anything and everything.  I will hand over my child to the Dr's and nurses to fix all the many flaws in their genetic make-up.  Fix their broken pieces. I will fight for them, advocate for them, tackle the stress, the fear, the uncertainty."  More often than not, Dr's are able to fix them.  And sometimes, they cannot.  
If you don't know what an ECMO machine is, then congratulations.  
If you don't know what an ART line is, congratulations.
If you don't know what TPN is, congratulations.
If you don't know what a g-tube does, congratulations.
I can go on and on and on...
This is a life that few understand. Few comprehend.  If you don't live it, how could you understand?  One of my goals in this incredibly isolating world of CHARGE Syndrome is to give you a glimpse.  Help you feel what it's like.  Witness all aspects -- the good and the bad.  The celebrations are bigger, richer, louder -- as they are usually hard-fought accomplishments.  Delayed accomplishments. Yesterday, I watched "Andi's Turning 4" birthday video - showing a video of her standing up from a seated position on the floor.  I don't know if people seeing that truly understand what an amazing accomplishment that was for her.  Incredibly delayed, but none-the-less, she did it. When your inner ear structure effects your balance, it's incredibly difficult to fight the chronic imbalance. It takes more energy, more strength, more concentration, more determination to do something that you or I do frequently.  The ability to simply stand up.  Those accomplishments are beyond incredible.  Often, they are despite some medical professionals doubting it would ever happen for that child.  Celebrations are loud, proud and a collective party amongst the entire CHARGE Syndrome community, because, frankly, we get it. We get how hard fought that accomplishment was.  On the converse of celebrations, are the hard times. Sometimes, it's a fall.  Sometimes it's careless words or actions at the hand of others.  Sometimes it is simple frustrations over medical coverage -- and having to advocate yet again against a broken system.  But sometimes, it's complications from a surgery.  Sometimes, it's heart failure.  Unresponsive. Vent. Seizures. Sometimes, we just don't know.  An ECMO machine. An Art Line. It's a medical nightmare that you can't hide from, you can't escape and you live in constant fear of... it's a reality for us. A daily f'ing reminder how fragile life is, yet, one that makes us struggle to find any sort of peace of mind. Peace of mind doesn't come easy, at all.  And when hard times set on one of our own, it's extremely jarring. And when the child dies, a piece of all of us dies too.  While we all work to float the family through grief, it also kills the spirit within because none of us are guaranteed a tomorrow. None of us.  When the kids get above five we tend to think of that as a mile marker to safe passage into adulthood.  So not true.  


In the past week, we have lost TWO of our older kids.  A six year old and a seven & a half year old.  Not much younger than Andi.  Our friends.  I am absolutely shocked and sickened.  I can't believe it.  It's a whole new low.  Even as I sit here staring at the screen, eyes glazing over rereading the words I wrote, I still can't wrap my head around it.  I doubt how much more our hearts can handle. How much more our community can grieve.  


A bunch of CHARGE Mom's are heading to Toronto to support one of our grieving families.  Unfortunately, I cannot join them.  I can't think of anywhere I'd rather be though than with our friends living this life, fighting this fight.  It's a bond we never asked for, but need more than ever.




So, to my CHARGE families - you are all in my heart and head.  And to my grieving friends, you are not walking this path alone.  I'm right there with you and am always available for you.  To the kids we've lost... Asher Britton and Noah Ashton, you are so loved and I will never forget you.  

Monday, April 30, 2018

CHANGES, CHANGES, CHANGES

Things are changing in lil' Andi Bean's world.  When we moved here over four years ago, we learned of a state-run program called 'Katie Beckett's Deeming Waiver', and were encouraged by multiple medical sources to apply.  Katie Beckett deeming waiver is Medicaid for medically fragile, medically dependent kids - like Andi.  We jumped through the flaming hoops over three years ago, and were granted access to Medicaid.  For us, it paid for things that our insurance did not cover.  Mainly, Andi's hearing aid ($1500.), and more importantly, her three hours of outside therapy services she has received each week: physical therapy, occupational therapy and speech.  These services have been critical to Andi's success.  Her walking has strengthened so she's no longer running into the walls.  Her motor planning is good, although her visual spatial perception still needs work.  Lastly, her speech has improved drastically.  People no longer ask me to translate every single statement she utters.

We received notice that her yearly renewal, which met denial and we appealed with additional paperwork from both her pediatrician and her therapists, has been ruled a final determination of denial.  

So, that means, we'll be out of pocket for almost all of her services, as her medical coverage really doesn't cover shit for a kid like Andi.  Keep in mind, Andi hit multi-million dollar baby at a mere 5 months old.  Really, four months old - but let's just push that out a few extra weeks of hospitalization.  To get Andi to catch-up or compete with peers, it has taken a minimum of 12 hours a month outside of school.  I believe in her IEP, she was allocated several hours a month as well.  It takes a lot of work.  It takes a lot of time.  It takes a lot of money.  

So, it needs to be said, she is the face of the medical cuts caused by a new administration.  This is who is effected by  your $20. a month of social services.  Yes, I make a good living, but, you're really asking me to afford more than a mortgage payment to keep Andi in therapeutic services?  Seriously, 200-300. a session, 3 a week, let's just go cheap on that and estimate it to be 600. a week.  That's $2400. a month I'd need to cough up.  Between shitty insurance that we pay out of the ass for (sorry for the vulgarity Dad) but we pay money just for the coverage, doesn't mean the coverage is any good.  And let's just recap -- we did a year of dual company insurance... they only helped each other pay the bill, not help us pay less.  It's insane.  So losing this Medicaid, will impact Andi's progress, due to affordability.  Is that fair to Andi?

Luckily, Andi has a lot of interest.  We're going to try to find her singing lessons, as she wants to compete on The Voice; Tai Kwon Do (sp?) for balance and discipline, and swimming lessons for core strength, and Brownies/Girl Scouts, for the hope of making some true friends -- as most peers don't truly embrace Andi as they don't fully understand her.  Additionally, the ENT is wanting us to consider switching Andi from a typical hearing aid, to a bone-conduction hearing aid (BAHA), which is according to the audiologist, given her type of hearing loss (middle ear), this switch would greatly improve her hearing.  They want to have us back for comparison testing.  Surgery like this, sounds expensive, and our shitty insurance likely won't cover much.  What's that look like, $30k?  $50k.  I mean, do you have that kind of cash to pay for that?  I know I don't.

So, I share all this, because most readers know Andi.  And knowing Andi, means when you go to vote, you might be more inclined to support services that support kids like Andi. I am not here to get on a political platform.  Just trying to personalize the ramifications of your vote.  What really matters to you?  I know for many of you, Andi is your only connection to this world. Embrace that thought.

Andi will be fine.  In fact, she'll probably thrive with the change in her weekly dynamic, challenging her in ways that traditional therapy can't.  But Andi isn't the only one effected by these cut backs.  Please keep that in mind.  This is just the tip of the effected of your decisions.  I challenge you to consider that.  Embrace that.  As I can name a handful in my family's small circle alone that support these cuts.  ANDI is who is effected.  Andi and her classmates.  This is the reality of the situation.  This is that level of humanity you fail to embrace.

Eat it.  (and yes, Dad, I edited that for you!)