Aislinn's Treasures Out of Session
by Michelle Voss-Shelley

I recently supported the movement of a new bill that would require fingerprint based background checks for various medical professionals. I supported this bill as a movement to protect Ailsinn and others from brutal physical abuse, sexual abuse, and the misappropriation of medication while under the care of a nurse, CNA or other medical professionals. As you may recall the name of this bill was The Patient Safety Act. 

 

It was a positive experience to have had the opportunity to work with a lobbyist, other families who have suffered mistreatment or even death of a family member due to neglectful, abusive, or dangerous care from a licensed medical professional, and another government agency.  My testimony was empowering, moving, and influential. Tears flowed from my eyes as I recounted Aislinn’s damaged and failed medicine port, multiple bodily bruising, bloody lacerations, ruptured inner ear tissue, and wounded head on Aislinn’s medically fragile body.  I shared her contiuned PTSD due to her abuse.  As others listened to my testimony, tears flowed from their eyes as I describe the violent and abusive care Aislinn endured at the hands of a licensed home healthcare nurse.  No one should suffer from abuse!

 

I know many families with At Risk children, parents or siblings that would have been further protected under The Patient Safety Act. I imagined a sense of peace of knowing the person caring for them did not have a criminal background. This is my utopia. 

 

I could just scream and ROAR because I recently learned that the bill for The Patient Safety Act was lost in the Senate after making its way the through the House, Finance, and Appropriations! See https://leg.colorado.gov/bills/hb17-1121. If the safety of your loved ones or At Risk family member is important to you, I would ask that you reach out to your local senators and representatives. Now is the time to further bend his or her ear. They are of course "Out of Session" now and should be available to speak with their constituents. 

 

As I understand it, current legislation will sunset next year which impacts certain out of state medical licensing. What a bummer because there is already a shortage of skilled nursing in Colorado. The Patient Safety Act would have amended current legislation keeping license protability intact.

 

I am sorry Aislinn. I failed you in this most recent Session. I'll be back because it’s painful to see you continuously suffer and re-live your trauma and fear of the lift system and changing table. I am never Out of Session. I will continue to work on legislation and ways to protect you and others from the Monster and those like her. 

 

Love, 

Michelle Voss-Shelley

(Mom to 10 year old Aislinn living with a miscoded GRIN1 gene)

(butterflyicebaby@gmail.com)

Aislinn's Treasures When Superman Visits
by Michelle Voss-Shelley

 

Hi it's me...Aislinn. I am pretty sick these days.  I am also recovering from major spinal surgery too. I had two metal rods surgically placed along my spine. The pain sucks and now I am back in the hospital because I cannot breath on my own. I miss school, my big sister and my pets. Mommy and Daddy are exhausted and scared.

 

 

Recently a caped friend flew down to visited and protect me.  It was so good to see him! 

 

 

 

 

My caped friend said these machines will shake my booty!  Well, actually they will shake and pull out the fluid and infection in my lungs when I get home. Whenever that will be.  How did he know I was going to need these machines only weeks down the road? Was my caped friend a superhero or angel...

 

 

My caped friend brought me smiles. I really needed to turn my frown upside down.  

 


When I get out of this joint, I am going to have the biggest party!  I will swing and giggle with my caped friend, his parents, my friends and the rest of my family.  I promised my friend...Superman...that I would giggle loud enough so I could be heard out of this world. 


Oh right...my caped friend is Superman and when he comes to visit, he brings me strength, light and love.  

 

Love, 

Michelle Voss-Shelley

(Mom to 10 year old Aislinn living with a miscoded GRIN1 gene) 

(butterflyicebaby@gmail.com)

 

Aislinn's Treasures The Voice
by Michelle Voss-Shelley

 

It is the eve of finding out whether or not the licensed nurse (a.k.a. The Monster) decides to take the case to trial or not or try to make a plea bargain.  The Monster was charged with multiple felonies pertaining to repeat assaults on my sweet Aislinn.

 

I am a wreck!  I am exhausted!  I believe this has been the biggest darkness in my life.

 

It's been nearly three months since The Monster last assaulted Aislinn.  Countless hours have been spent tending to Aislinn's trauma. She still fears the lift system, changing table, wheelchair, and bed.  She still has trouble sleeping.  I can only imagine that she is dreaming of... The Monster?!?

 

We all have worked none stop to sooth and reassure her that The Monster is never coming back.  The Monster will no longer physically harm my defenseless baby girl.

 

It has been a living nightmare knowing Aislinn was tortured by a person of trust.  She' s been harmed in ways that only God and time can heal.  The scary thing is no one knows how much time Aislinn has left on Earth.  Will it be long enough time for me to see the return of the joy and laughter in her soul?  

 

Most of Aislinn's life her daddy and I have been her voice for things like a her right to an education, treatment for illnesses, extensive medical testing, surgeries, selecting a team of expert doctors/therapies, and securing licensed professional care.  

 

We are now The Voice regarding this sickening and life changing event.  The Voice has talked to the amazing local SVU team. Tears of pain and frustration have been shared with the local District Attorney's Office. Has The Voice been strong and loud enough to help maintain felony charges against The Monster?   Guess we will all find out soon...

 

Love,

Michelle Voss- Shelley

(Mom to 10 year old Aislinn living with a miscoded GRIN1)

(butterflyicebaby@gmail.com) 

 

Aislinn's Treasures Zen
by Michelle Voss-Shelley



 
Hi it's is me, Aislinn.  It has been awhile since you last heard from me.  I have so much to share with you.  Sit back and relax because I have milestones to share with you.
 
It seems like forever ago I was trapped inside myself due to illness and rotten nursing care.  Yep, I said it...rotten nursing care.  It was so difficult for me to express myself and even engage in the simplest tasks.  My mom put her energy into finding the best agency and nursing to help care for me. Now I am moving my own mountains.  
 
 
I was well enough to attended my big sister's school play titled 101 Dalmations, and her Continuation Ceremony.   Way to go Alexis!
 

 
 
My scoliosis has been very painful.  Muscle spasms during all hours of the day. So painful I am up all night.  Grrrr!  I really don't want to have surgery to put icky rods in my spine.  It was a relief when my dad discovered a chiropractor that makes house calls. How cool is that?! Dr. V. uses an Activator which feels like a highspeed poke.  To me it looks like a miniture pogo stick...haha! The treatment will take months...so whatever...I am just pleased to say I am pooping without the aide of Milk of Magnesium or suppositories!  A small victory!
 
I have been working really hard on speaking for myself.  Checkout this video that proves it.  Mom cries for joy each time she watches it.  


 
I have gone to every one of my sister's softball games this season.  I think I am a good luck charm. They are undefeated so far this season.  Go Eagles!  I love this Eagles' team player!
 
 
I saved the best for last.  I have been out of the hosptial for 366 days!  I have found my inner peace. I am well right now.  I am sharing a little video that expresses my Zen!  What is your Zen?  
 
Michelle D. Voss-Shelley
(Mom to nine year old Aislinn with a GRIN1 mutation)
(butterflyicebaby@gmail.com)

 

Aislinn's Treasures Copper
by Michelle Voss-Shelley

 

 

There are people in Aislinn's world who make sacrifices for her.  A teacher, a nurse, therapist, or a doctor who must think outside the box. It might be a boss that absorbs part of the work load for any number of reasons.  Well the good ones anyway.  Perhaps it's the other child waiting in the wings.

 

 

Some might say "it's your job" or "that's life" or "life is a b&$@#" instead of appreciating the dedication, energy and solid connections it takes to keep a family together, a good job, and maintain friendships when life gives you a special needs child that requires care 24/7.  I just have to shake my head and say a prayer because I know my life is not for the faint hearted, nay sayers, or negative energy.

 

 

Let's get back to two people who sacrifice the most...her parents. Yeah, David and I. We are the glue or at times frayed threads that keep the family together while frequently being on red alert.

 

 

I like to think of us as Cu. Sorry CU Buff alumni I don't meaning you.  I dont mean Copper Mountain either where I do much soulsearching.  I am talking about the element COPPER. Copper is much more efficient than glue that melts under pressure. Or a thread that can snap when tested because of its tinsel strength.  Copper is strong, flexible, absorbs heat, and withstands the bitter cold.  Its properties help receive and transfers energy.

 

 

Copper is also full of tradition. Did you know that copper gifts are common for a 22nd wedding anniversary?  It's true.

 

 

Imaging a element such as copper celebrating all it takes to be married for 22 years. Pretty impressive these days when under the best of circumstances.

 

 

 

Today is our 22nd wedding anniversary. In a brief and stolen moment tonight, we will be celebrating us. Renewing the energy in our marriage.  At this point in our long arduous journey, we will remember the good things that brought us together.  We will toast to the positive engery in our lives. It won't be about the gifts.  On this day it will be about the strength of our bond as man and wife where no man or woman shall come between us.

 

Much love,

Michelle D.  Voss-Shelley (Mom to nine year old Aislinn with a GRIN1 mutation)

(butterflyicebaby@gmail.com)