Meet Mylee!

Who I Am


My name is Mylee Grace Eaton.  I was born on August 14, 2006.  I have been a fighter since the very beginning.  I started having difficulty breathing and spent nine days in the Neonatal Intensive Care Unit where I fought my first battle with aspiration pnuemonia.  My first year of life was difficult, I spent a lot of time in and out of hospitals battling more pneumonia and trying to figure out what was wrong.  I was diagnosed with severe dysphagia.  I aspirate on everything, which means I don't recognize when food or liquids "go down the wrong pipe"...into my trachea and lungs.


My first MRI discovered Mild Tonsillor Ectopia (aka Chiari Malformation).  I was to have another MRI scan at 1 year.  In November of 2007 I went in for another MRI and this time I was diagnosed with a Chiari type 1 Malformation.  I met with my neurosurgeon as I lay in-patient yet again battling another round of pneumonia.


On January 14, 2008 a Nissen Fundoplication was performed so that I would not aspirate stomach acid
 (I also had reflux/GERD).  My surgeon also placed a gastrointestinal tube into my stomach.  I am no longer able to eat or drink anything by mouth.  Everything is given to me via g-tube until my brain starts to send the proper signals allowing my swallowing muscles to work properly.


On January 17th, 2008 just 3 days after my first surgery, I had a brain decompression.  My brain is no longer herniating into my spinal column.  I will continue to have brain MRI's to check for any abnormalities caused by this disorder.
In July, 2009 an abnormality was found yet again on my MRI, cerebellar atrophy.  I have been diagnosed with an unknown progressive neurodegenerative disease.  I have been clinically diagnosed with Mitochondrial Disease.  And at this time it is unknown how much of my brain cells will be taken from me or how much of the atrophy will spread.  My team of doctors continues to look for answers to all of my families questions.   I am currently in Physical, Occupational, and Speech therapy.  I work hard everyday so that one day I will be able to eat by mouth, walk on my own, and say the simplest things like "mommy and daddy".  You can follow my journey www.caringbridge.org/visit/mylee.


                I Am A Warrior Princess!
                                                                

-NeVeR GiVe UP!!

Meet Zach & Noah!

ZACHARY SIGMUND LASHLEY

Zachary was due October 15, 1999 but showed up on June 23^rd.  A pregnancy is considered viable at 24 weeks, so Zach beat that label by about 3 days.  There are a plethora of problems that a baby THAT premature can endure, but Zach’s bottom line was Johnson Taber Lewis Syndrome. (named after his and other neurologists) This means that as a micro-preemie (pre 25 weeks), his cerebellum was simply not done developing, and therefore led to Cerebral Palsy.  Cerebral Palsy is a result of brain damage that affects muscle tone. In most cases of CP, the afflicted are spastic or ‘tight.’ This is due to high tone. There are also cases of Hypotonia, or low tone; and there are MIXED cases, of both high and low tone, that can result in involuntary movement called Athetosis.  Lucky Zach (NOT) has Mixed-Tone CP with Athetosis.  The only time his body is not moving is when he is sleeping. If he wants to control a limb and do something purposeful, he has to overpower the involuntary movement first. Can you imagine how difficult and exhausting that would be?  He burns calories like mad!

Zach is wheelchair bound and technically nonverbal, but those who know and are close to him understand the communication that he does do.  Unless he is sick or hurting, he is a happy boy and spreads joy like wildfire. He has beautiful blue eyes, long eyelashes, and a contagious smile, giggle & squeal. 

Other issues that stem from his CP and/or Prematurity include CVI (Cortical Visual Impairment), Reflux, Constipation, and Respiratory Difficulty. The reflux and constipation have been well controlled for years, thank goodness.  Zach wears a respiratory vest that vibrates, and takes breathing treatments twice a day to try and boost his system and keep him healthy.

He is in 6^th grade and will be 12 this year. He LOVES music, animals, lights and funny noises.  He is VERY social. He LOVES school, going out, and hanging out.  He is also quite the ladies’ man. Watch yourself, girls! He manages to get that hand awful close to your skirts and leaves waitresses turning with evil eyes toward dad!! Lol    He has a lil devil inside him and likes to ‘play’ people. He understands EVERYTHING said to or around him, he just can’t communicate back effectively yet to show it consistently.  He does have a communication device that can talk for him, but he gets so excited when he hits the switch, that his body goes crazy and he has to start all over again.  We’re hoping he will be able to get Deep Brain Stimulation Surgery someday soon to reduce the involuntary movement so he can focus on the purposeful.

NOAH RYAN LASHLEY

Noah’s mom lived in the hospital for three months, on complete bed-rest, so that she could get him here healthy. He was still born premature at 35 weeks, but was relatively healthy aside from needing some extra time under a blue light for Jaundice.  Nevertheless, genetics kicked in for Noah, and he didn’t get to be categorized as the ‘Neurotypical’ child for whom his mom prayed.  His parents began noticing that something wasn’t quite right, even though he was reaching milestones early, including walking and talking.  He also had quite the impressive vocabulary very early on.  It was always very clear that he was really smart—gifted, in fact—but he just didn’t quite do things the way all the other kids did.  By 1^st grade, after a lot of appointments and research, his previous diagnoses of ADHD, and OCD with Anxiety, became secondary issues to his true diagnosis of Asperger’s Syndrome.  On paper, that’s “High Functioning Autism Spectrum Disorder.”

Noah’s parents call him “Motor Mouth!” He can talk forever about a subject, and doesn’t even seem to notice if no one else is interested. He has trouble reading body language and social cues.  The thing about Asperger’s is that is a disorder of the central nervous system that causes sensory perception to be affected.  Noah experiences all of his five senses much more so than we do.  He can literally feel a noise, taste, or smell.  For example, he cannot tolerate loud or irritating noises.  But, in addition to the obvious ways one’s senses can be hypersensitive, there are more abstract ways.  He doesn’t mean to be, but Noah is VERY rigid in his thinking. It is VERY hard for him to see outside a box or to let go of control of a situation.  Maintaining that control is the only way his mind can help his body feel safe.  This also makes him very ego-centric.  His mind & body go out of its way to make sure he knows how ITS feeling, but it is very hard for him to understand what others are feeling. Sometimes it’s even hard for him to understand that others even HAVE different feelings.  He is also EXTREMELY literal and speaks exactly what he is thinking without any kind of filter.

Noah is working very hard to deal with all of these issues and adapt to the world around him. He sees a Psychologist, a Psychiatrist, an Occupational Therapist and a Speech Therapist. He also takes medication to help with his anxiety, attention span, obsessive/compulsive tendencies and to improve upon his executive skills.

Noah likes to surf the internet, play video games, make & do thinking puzzles, play school, draw, and do crafts & science experiments. He is a wonderful speller. He is really good with special needs kids. He LOVES his brother, Zach. He nurtures him, plays with him, and helps him interact with the world.  Whenever he has a chance to be around other special needs kids, he does the same.

Meet Zane! The boy who is our inspiration!

Zane came into this world on December 02, 2006 weighing 7lbs, 2ozs. He was so small, yet so beautiful! Our journey into an unknown world began a month after he was born when he started having seizures. At first it seemed like he had a funny little twitch but then we began to realize that it was more than that. He was a month and a half old when he had his first MRI and EEG done to figure out what the problem was.  The news on the MRI and EEG was not good. The doctor explained that he had a brain malformation known as Neuronal Migration Defect and this was the cause of his seizures. I will never forget that day and that's when my heart had sunk into the abyss somewhere. All the plans I had for him had some how disappeared within a matter of minutes. The boy who I thought would grow up, get married, have kids, was no longer a possibility. 


Like any parent I went home and researched Neuronal Migration Defect. I wanted to know everything I could about what was going on inside his little head. I found out at that point that Neuronal Migration Defect is a large term used for a group of syndromes and disorders. I now found myself on a quest to pinpoint which syndrome or disorder Zane fit into. My quest led me to a geneticist by the name of Dobyn's out of Chicago. I e-mailed Dobyn's and to be honest didn't really believe that I would get a response. Well he proved me wrong. He requested that I send him a story, MRI, and picture of Zane. That's what I did and 8 weeks later I got my diagnosis.


On Halloween 2007 we received Zane's diagnosis from the specialist. Zane was diagnosed with lissencephaly. Most people have no idea what this is but it is a rare brain malformation that affects the neuronal migration of the brain during fetal development. This rare disorder affects every aspect of his life but with the help and love of his family,  he is managing very well.  


 Zane is now 4 years old and doing very well. He continues to have seizures but they are controlled with medicine. He is g-tube fed and is on a strict diet known as the Keto diet. He receives visual and physical therapy from the blind foundation once a week due to having cortical vision impairment(brain doesn't register what the eyes see)and Optic Nerve Hypoplasia(underdevelopment of the optic nerve). He also receives occupational therapy for motor skills. He is severely developmentally delayed(doesn't roll, sit, or hold head up very well). Zane's hearing is also affected and he receives services through the Deaf and Blind School of Arizona.


Zane has two older brothers Logan and Caden ages 7 and 5 who keep him very busy. His brothers love him with all their heart and try to include him in whatever they are doing.


  For now Zane's outcome is unknown but we hope for the best each and everyday. I know this isn't the life we had envisioned for ourselves but we have grown to love everything and everyone that comes with it.

Meet Jacob & Faith!

Jacob who is 15 was born premature at only 31 weeks. He was in the hospital for 12 weeks. During this time the doctors discovered that he had water on the brain and that there was a stem missing in his brain. This important stem sends information back and forth to both sides of his brain. Jacob also has a mild case of Cerebral Palsy which affects only his lower extremities, from his hips down, on both legs. He enjoys music, his computer and likes to collect albums (vinyls) for a record player. He has been my rock and has taught me patience and inner strength that let's me know that I can overcome anything.

Faith is 6 years old and is diagnosed with Sturge-Weber syndrome. This is a rare case that only happens to 2 kids out of 1,000 born. She was born with a port-wine stain birthmark (mangioma) on her face and Glaucoma in left eye. She also has calcification's on the left side of her brain which causes on-set seizures. Due to these calcification's, she can also have mini strokes. She is also delayed to about a two and a half to three year old. She was born on time and we had no idea that she had this till she was born. She brings me so much joy. She is a loving child that enjoys dancing to music, watching her veggie-tales movies, loves school, and going bye bye!

Both Jacob and Faith have taught me so much. I know GOD is not done with them or me yet. He's teaching all of us that we got to lean on him and grow and show him through my kids.
I am so very blessed that GOD choose me to be their mom!! ♥ Rhonda