#teamaddy…

Little Heroes

November 15, 2016

Hi everyone! I am Addison’s mommy. She is an amazing little girl and I am so very blessed to have her in my life. Here is a little bit of what we have in our life each day and more importantly what Addy faces every day.

Addy was born premature October 06, 2009 with many challenges to bare but has a spirit that shines her God given light. At the time we only knew she had a very mild case of scoliosis but little did we know it was about to get a lot more complicated and painful from here on out. It seemed like we would get educated enough with one diagnosis just for another one to be added to Addy’s list of diagnosis or as we call them, Addy’s super powers!

She was born with a rare chromosome disease called 22q11.2 microduplication syndrome and from there is where all her diagnosis started coming in. Here’s a list of our little hero’s battles she continues to fight every day!
Severe neuromuscular scoliosis with a 97 degree curve in her back which she was placed on oxygen and Hospice for, a couple months ago, as it is starting to crush her lungs and organs and her heart is stressed. The scoliosis continues to progress in growth in curving and twisting leaving her in a lot of pain but she still smiles through it most days
Multiple butterfly and hemi vertebra’s
Missing 2 ribs
ASD (Atrial Septal Defect) hole in the heart
Kidney Reflux (born with only one kidney and that one is enlarged
Acid reflux
Severe epilepsy which causes her to stop breathing at times with grand mal seizures but has recently been placed on cannabis oil through the state of Idaho and it has done miracles with her
Dysautonomia
Optic Nerve Atrophy
Cortical Vision Impairment
Tethered Cord (Addy had surgery on this once at Primary Children’s and it almost took her life. What was suppose to be an overnight stay turned into almost a month stay with acute pain care team taking care of her)
Epistaxis (nose bleeds) she gets these with seizures due to pressure when seizing
Aspiration
Agenesis of the Corpus Callosum
Small ear canals
Addy is unable to eat but gets her supplement through bottle feeding (Vanilla pediasure warmed up and ice cold water) She definitely knows what she likes. She also learned to hold her own bottle about two years ago!
She has a weakened immune system! Addy has numerous doctor visits , procedures, hospital visits, ambulance rides, and many sleepless nights in the ER/hospitals. Her life expectancy has always varied by doctor but anywhere from age 2 to 3 years old and with not much inspiration as to the expectancy on what she would ever be able to achieve. Addy is now the lucky number 7 years old and doing what most in the medical world said she would never be able to do. Addy was never expected to do many of the simple things we take for granted every day like show emotion, move her legs and arms, talk, just to name a few. Although Addy is unable to do many things like sit up, walk, talk on cue, eat, and we don’t know what she perceives through her beautiful blue eyes. Through love, hope, faith, Addy’s will, and the Grace of God what Addy is and can do, can only be explained as a miracle. Addy does not have a day without some pain and is unable to tell me where it hurts but her spirit and personality shine. What Addy is and can do is so much more than ever expected and I am so proud the Lord trusted me to take care of her. Although exhausting, heartbreaking and very painful, I have to believe that she is the Lords light and has provided purpose and meaning to me and everyone that knows her. When life gets me down I try to think about all the things that Addy is and does and then I realize I have no reason to complain. Addy was never expected to have hair (look at her beautiful hair), she was never expected to have teeth (she has a whole mouthful and is in the Zero Cavity Club at the dentist office), she can smile, laughs, cries, pouts, kicks her feet, moves her arms, holds toys, pushes buttons, pulls toys, rolls over, attempts to crawl, blows kisses, says momma, nana, ouch, hi, oink, sissy, Deja (her sissy’s name), uh oh, hug and heeey. Her words are not always on cue, she struggles to get rolled over and her kisses take a minute to get out but she eventually gets it done. Her 9 year old sister is her biggest fan and through her eyes Addy is perfect. They have a close bond that would just bring tears to your eyes. If her sister receives a phone call she never leaves Addy out…she reminds everyone on the phone that they must talk to Addy. She tells us that she can feel Addy’s heart and what it’s saying. I am a single mother with an education but decided to quit my job and schooling to attend to her numerous needs and provide her the best care and love every minute of her life here on earth. Simply said she needs me and I am told by many, “I am the air she breathes”. I am not certain I am that great but I love her beyond words and want to be that for her as she is my life. She has taught me so much in life and about life. She is very much loved and has a lot of love to give back. To know her is to love her. Some fun things to know about Addy are she loves music! Not just any type of music but hip hop and rap are her favorite. Her number one favorite is Pitbull. Next to me and her sister music is her calm in her storm and is medicine to her for whatever reason 🙂 Addy has learned to fake laugh just to make us laugh. 🙂 She loves to dance, being dipped upside down and loves to dance in the wind with her beautiful hair blowing in the wind. She extends her arms like she can fly. 🙂. She is an exceptional little girl and I feel very blessed every day that God has entrusted me with such a precious and fragile life, one of his very own angels! Thank you to everyone for the love, prayers, and support. God bless you all!! #teamADDY