Meet Hayden & Tanner

Both boys are diagnosed with a rare neurodegenerative disease called mitochondrial disease. Hayden is 6 and loves the CARS movie, playing his guitar & anything to do with The Beatles. He is very smart & artistic. Hayden has autism, immune deficency & gi issues in addition to mitochondrial disease. Tanner is 4 & loves Toy Story. He wants to be a cowboy when he grows up & loves to laugh & giggle. He is a fun boy who loves to make others laugh & loves to play pretend play. Tanner is 100% g tube fed & also suffers from Eosiniphilic disease, immune deficency along with the mitochondrial disease. Having a child with autism has taught me patience & acceptance. It is alot of hard work to keep the boys healthy & looking good but they are SO worth it!

The Blair Family

Meet Rhyan!

Rhyan was born 3 weeks early due to her not growing. I started to loose weight and she didn’t catch up to other babies her age so the OBGYN decided to induce me early. When Rhyan was born, she had a maturity of a 34 week old. She weighed only 4 lbs 10 ounces. 

Rhyan is now a happy 1 year old. She is still small for her age, but is catching up to her peers. She aspirates on any liquid thinner than honey thick- think snot thick, has delayed stomach emptying, and has reflux. She also sees a feeding therapist due to the fact that she has a negative association with sucking on a bottle. She has an NG tube because she cannot consume enough formula to meet her needs. Every night, she gets fed through this tube.

Rhyan is the light of our lives. Every day she is learning something new. Every day she gives us multiple reasons to smile and giggle. She is a very happy little girl. She loves to laugh and play with her dogs and toys. Rhyan is a gift from God.

Zane and I

Here are some recent photos that my husband took of my son Zane and I. Zane is the boy behind Smiles for Zane. These pictures were taken after my husband got some new lighting equipment. As you can see we became his test subjects. I love the way the lighting and the photos turned out. We will definitely be printing these to hang on our wall.

Meet Abigail!

Abigail ELizabeth turned 2 on the 24th of March, she was born 2 months early due to her shutting my kidneys down and blocking my ureter. This caused my kidneys to block which brought on a lot of infections and 7 nephrostomy tubes having to be placed. 

We have had a rough go at life but she is such a Miracle in our lives. As of right now she is suffering from Severe Dysphagia. She is considered to have failure to thrive due to her not being able to swallow properly. She barely weighs 23lbs as of right now due to this issue. She has many specialists that she sees and they can't seem to figure out why she is getting worse. We are waiting on several extensive tests to see if they can pinpoint the issue. 

Melissa....

No Donation Button! Booo!

Where is our donation button? This is a question we have been asked and this is the answer I have at the moment.


We unfortunately had to remove our donation button off of our Smiles for Zane blog. After going round and round with Paypal, it has come to our attention that we must be stated as a Non-profit. In my mind we are but the proper paperwork must be in their possession. We will be working on getting this done but it is an expensive and lengthy process.

So for those of you who have asked where they can donate, please hang on. I am going to speak with my bank this week to figure out if there is something that can be done through them. If there is, then I will post that information as soon as it becomes available.

Meet Adorable Kaden!

We were overjoyed to learn that our fourth child was going to be a boy.  On September 24, 2010 at 7:46am, we welcomed to this world and to our family, Kaden William.  He weighed a healthy 9lbs 7ozs and had a head full of chestnut colored hair.  He had rolls that spilled all the way from his sweet little shoulders down to his gigantic feet.  He was pink as pink could be and had a cry that didn’t seem to end.  From the outside our baby boy looked perfect.  But beating in his little chest was heart that was broken.  We were unaware that our little boy was born with a Congenital Heart Defect (CHD).


Shortly after Kaden was born he was taken to the nursery for his first bath and such.  It was there that a nurse noticed that he had quite a loud heart murmur.  Heart murmurs are not uncommon in new born babies.  Every person’s heart has a ductus arteriosus, a shunt connecting the pulmonary artery to the aortic arch.  This is the duct that allows blood to bypass a fetus’ fluid filled lungs while in utero.  When a new born begins to take their first breaths, the duct closes and the baby’s blood begins to pass through the lungs to oxygenate the body. Sometimes, the duct doesn’t close right away and a murmur is heard as the un-oxygenated blood passed through that opening.  Almost always within a few hours after birth, that duct closes and a murmur is no longer heard.   This is what the doctors and nurses assumed was happening with Kaden.  They decided to give him a while to adjust to life outside of the womb and decided to just watch him.  The following morning, the pediatrician stopped by and became alarmed when he listened to Kaden and not only was the murmur still there; but it was loud and seemed to actually be worse than the day he was born. He decided that an echocardiogram would be necessary to ensure that our son had a healthy heart.  Kaden went for his first echo at just 24 hours old. It was at about 10:30pm the same night, when our son was about 36 hours old, that a nurse came in to tell us that a pediatric cardiologist from St. Joes would be coming to speak with us about Kaden. Immediately we knew something was wrong. Why would a specialist be driving all the way across town late on a Saturday night to talk with us about our baby?  Dr. Pophal arrived and began to explain to us what the echo had revealed.  Our son was born with a CHD called Tetralogy Of Fallot which is comprised of four anatomical abnormalities which are: VSD (ventricular septal defect), pulmonary stenosis (narrowing of the pulmonary valve), overriding aorta and right ventricular hypertrophy.  Kaden also had an ASD (atrial septal defect).  Dr. Pophal made us aware that the only “cure” for our son would be open heart surgery to repair Kaden’s heart.  We were crushed.  I remember lying in the hospital bed and looking over at Kaden as he lay in the bassinette swaddled tightly sleeping.  He was so perfect, and yet he wasn’t.   In complete shock and disbelief we asked questions that we already knew the answers to hoping that we had heard wrong. Denial set in right away, and several times Brett asked Dr. Pophal if he was sure about what he was telling us.  It was a lot to process and we were struggling to do so.  The first few days after we were given the news, were full of all kinds of emotion.  We were supposed to be bonding with our new son not watching his every move to make sure he was still breathing or that his heart was still beating.  


We were able to take Kaden home from the hospital with no monitors but we did visit the cardiologist every other week so that an echo could be performed to see how his heart was holding up.  I remember praying at each echo that they would say it was a mistake and his heart was now perfect.  I would watch closely and try to understand and analyze what I heard and saw, all the while having no real understanding of what appeared before me on the screen.  With each echo, his heart was beginning to show stress.  He was put on medication to help with the pulmonary hypertension when he was 5 weeks old.  The hope was to stave off surgery until he was 4-6 months old.


  Unfortunately when he was 7 weeks old, we were told that the surgery could not wait.  His heart was working overtime and needed to be fixed sooner than we had hoped.  So on December 1, 2010 at 9 weeks old, Kaden underwent open heart surgery to repair his broken heart.  When the time came to hand over our baby to the nurse, it took everything in me to let go of him. Brett literally had to pry him from my arms. I have never felt pain like that before. The uncertainty of whether or not our baby would survive was crippling to me.  But after nearly 4 hours we received word that the surgery was complete and he was doing well. He came off the heart lung bypass machine like a champ and by hour 5 he was done and we were able to see our son.  We had been prepared for what he would look like. We knew that there would be tubes and machines and ventilator breathing for him.  I was afraid to see him and at the same time could hardly wait.  Brett and I were walked back to his room and there he lay, a tiny baby in a giant bed, just as I had been prepared for.  Every inch of his small body, which just hours before smelled of baby lotion, was covered in lines and wires.  There were about a half dozen medications keeping him alive.  Machines beeped and alarmed as his heart rate was working to stabilize.  But somehow in all of the foreignness of the room, there was peace.  I was so glad that he was ok and that he had made it through his surgery.  Now I just needed to get him recovered.  The first 24 hours were filled with ups and downs, but overall he did well. I was finally able to hold my baby 3 days after surgery and it was like holding him for the first time all over again.  He recovered like a champ and mere 6 days after his open heart surgery, we took him home.  He continues to do well and is growing like a weed and doing all the things that an almost 6 month old baby should be doing. 


It is likely that he will undergo another open heart surgery to replace his faulty valve.  But when that is, we don’t know.  Kaden will continue to see a cardiologist for the rest of his life so that his heart can be monitored.


We feel truly blessed to be his parents and are so glad that he is part of our family.  We have learned so much from him. Every time we see that red scar running down his chest, we are reminded of how precious life is and that in a moment it could be gone. 


Brett & Allison 

I HEART FACES CHALLENGE!

How cute is this little guy! Smiles for Zane had the lucky opportunity to take pictures of this smiling little man. We hope "I Heart Faces" agrees!

Meet Cute Renzo!

Our life was blessed with the birth of Lorenzo (Renzo) on September 7, 2007. His father, our son, was a teen parent, whom our entire family has helped him with raising Renzo. Renzo’s birth was a typical joyous occasion, until a few days later when we were told of some of the complications he was born and would live with - Cardiac Peripheral Pulmonic Stenosis (repaired 2007), Colpocephaly (brain malformation), and Dysmorphic Features (low set ears, small eyes, dimple on the bridge of his nose). At the time, all of these were just a bunch of medical terms that had no meaning to any of us. But before he ever left the hospital we were told not to expect this beautiful little boy to live very long. But through it all we never gave up on our faith or our hope to see this little guy grow. 
As time went on, we learned exactly what these diagnosis meant, and were later given a few more: Hypothyroidism, Unbalanced Chromosomal Rearrangement (+6p253p22.2; -6q27; +9q34.4); Deafblind/Dual Sensory Impairment (Cortical Visual Impairment, Nystagmus, Ptosis and a Mild to Moderate Bilateral Hearing Loss); Renal Arterial Stenosis with Hypertension; Hypospadius (repaired 2008); Cerabellar Hypoplasia; Hypoplastic Corpus Callosum; History of Febrile Seizures, Developmentally Delayed and considered Failure to Thrive. So far Renzo has had 7 (seven) surgeries and over a dozen hospitalizations in his very short life and he has several medications that he is required to take daily. 
But, diagnosis only allowed us to pursue specific therapies, interventions and evaluations that could best benefit Renzo. The most important thing to remember about Renzo is that he is so much more than all of the diagnoses he has been labeled with. And, although his diagnosis is not thought to be life-threatening, his prognosis is unknown. 

Renzo's a very busy little guy (and by little, we truly mean little – he is the size of an average 9 month old), he receives physical, occupational, and speech therapy as well as Anat Baniel Method Lessons weekly and it’s because of the many caring individuals who work with him, our family's commitment to give him the best care available, and Renzo’s hard work that he has made so much progress! He loves being independent. He doesn’t walk (yet) but crawls and pulls up on furniture, and spends most of his time on the floor where he enjoys exploring his environment, interacting with his toys, objects and other people. Renzo is non- verbal, but understands and/or uses over a dozen ASL signs. It took almost 3 years for him to eat orally. Prior to eating baby food, all his nutrition came through his bottle. And now that he is eating he loves Chocolate Ice Cream! For many people who have been around kids, eating may not seem like a big deal. But for us, it is another inchstone accomplished. And, yes, we mean inchstone, not milestone. When you have a kid with special health care needs, you relish in the small accomplishments. We have learned to make big deals out of what some take for granted. Renzo has come so far from that fragile little newborn baby that wasn't given much of a life before he ever stepped outside of the hospital.

Renzo loves music, especially Jack Johnson’s “Banana Pancakes”, “Bubbly Toes” and “Better Together” (he’s even seen/heard Jack in concert). He also loves and calms to the “Ava Maria”. Other things that Renzo enjoys are: water/bath time, crawling, being read to (especially “The Kissing Hand” and “That’s Not My Monkey”) and helping Nana Bunny turn the pages when she reads to him. Renzo loves playing rough with his Daddy; loves when his Tata Manuel hugs and snuggles him; and complies when his Nana Bunny asks him to give her his “Kissing Hand”; and he especially loves Tia Angel’s tickles! 

We are so blessed to have Renzo in our lives. He definitely has the spirit of a fighter! His strength is truly an inspiration to everyone around him! Renzo teaches us the true meaning of patience, determination, and happiness. He has patience with others and we have come to learn patience from him. Renzo truly has won the hearts of everyone he has come in contact with.

Meet Handsome Brady!

Brady was born in July 2005 and, to our surprise, popped out with a head full of blonde, curly hair.  He weighed 7 pounds 4 ounces and was absolutely beautiful.  The next few days filled us first-time parents with worry as Brady struggled to maintain his body temperature and to find the strength and coordination needed to suck and swallow.  However, after 5 days in the hospital our new little family headed home to start our life together.

Brady was very colicky and had trouble digesting typical formula.  We assumed he was just a high maintenance baby and eventually found alternative formulas and ways to feed our beautiful boy who didn’t like to eat.  However, at Brady’s six month check up, his pediatrician stated that Brady had very low muscle tone and directed us to meet with a developmental pediatrician.  The appointment that followed confirmed the fears we had been brushing aside for months.  Brady was not developing and, based upon some distinct facial features, likely had a genetic syndrome of some kind.

After six months of exhausting genetics testing to rule out some very scary, terminal diseases, Brady was finally diagnosed with 1p36 deletion syndrome.  As the many doctors and specialists we had seen had little information about this syndrome, we were overjoyed to find other families online whose children were living and thriving.

Today, Brady is 5 years old and attends Kindergarten in the local school district.  He has epilepsy which is well controlled with medication, and a smile that can light up any room.  He learned to walk at the age of three and now even runs and jumps, although navigating stairs is still a work in progress.  While Brady has not yet attained verbal speech, he understands almost everything spoken to him and communicates via sign language, a communication device, and some very effective methods of manipulating adults with his smile or kisses. 

Despite his limited expressive communication skills, Brady is in there.  He is a force to be reckoned with and has learned his colors, shapes, letters, and can spell his name on his “talker.” He has an uncanny ability to remember directions and places, as well as any promise his parents make to reward him for good behavior.  Brady’s greatest loves in life include buses, goats, dogs, other kids, and fast food chains too numerous to list.  He is well known at several neighborhood stores and restaurants and is, quite simply, the greatest thing to ever happen to our family. 

1p36 Deletion Syndrome is a chromosome disorder characterized by moderate to severe intellectual disability, delayed growth, limited speech ability and distinct facial features.  It is estimated that this syndrome occurs in one in every 5,000 to 10,000 births.  For more information on this syndrome, please visit http://www.1p36dsa.org/

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