Why I share his story...

Welcome to our little corner of the world! I am going to share with you the story of my little boy Blaze. 

You may wonder why I am willing to share so many details about my little boy. I share his story to help others better understand him. Until you know how far he has come, you can't fully appreciate where he is today. Blaze has been through a lot and it hasn't been easy.  He has been through more in seven years than many adults go through in a lifetime.

When I signed up as a foster parent I had no intentions of fostering special needs kids. I thought that needed to be for more equipped and better qualified families and we were far from that. I've always had a soft spot for people with special needs, but no desire to try to raise one (just being honest). When I accepted Blaze's placement I had no idea that anything was wrong with him. Little did I know that when I said "Yes" my world was about to change forever.

Within a few days in my home, I knew something was not right with Blaze. When the doctors started throwing out words like cytomegalovirus, nystagmus, and thrombocytopenia my head started spinning. I couldn't say those words much less spell them. What was I going to do? What was I thinking? How could I possibly meet this child's needs? As his foster parent, I had options.  I could call DFCS and have him moved to another home or I could do everything in my power to help him. After much thoughts and many prayers, I chose the harder path.

 I started researching. I wanted to learn everything possible so that I could help him to be the best that he could be. With every new diagnosis, I would do the same. Sometimes what I read left me feeling helpless and scared. Other times, I would find a spark of hope.  I started looking for other families, other kids, anybody who knew anything about these conditions. When they say a special needs parent becomes an expert at their own child, that is the truth. They have to. 

Blaze's unique needs opened up a new world that I never really knew existed. A special world full of people, and stories, and triumphs, and losses, and everything in between. I started making connections. I started finding other families and realized that I wasn't so alone. I found many others on this same path and they understood what most of our family and friends couldn't. They shared their stories and opened their hearts to us.  Now, I share his story because I want the whole world to know about this awful thing called CMV. I share his story in hopes that one mom will educate herself so that her child will not have to go through what my little boy has. 


 Blaze has been one of my greatest blessings! I can't even imagine my life without him. God sent Blaze to us because he knew that he needed us and we needed him, Blaze has made me a better and stronger person. As long as I live I will do everything that I can do to make his life better. Blaze is precious to me and I am BLESSED to be his mom! His story is the story of a miracle child. His story is a story of hope and it's a story worth sharing! 

Blaze's CMV Journey...

This Is His story...

In Feb of 2012, we got the call for a newborn little boy who needed a foster home. We said, YES! After waiting all day our new little guy arrived (straight from the hospital at only 2 days old).

Right away, I knew that something was different about this baby. When I questioned the caseworker about him, she didn't have much information for me. Only that he was born a few weeks early (estimated at leaast 4 weeks early). Hiis mom had no prenatal care at all, and drugs were present in his system at birth (which is why he was placed into foster care). That explained his uniqueness....I thought.

 He was a small baby (5 lbs and 18 inches long) with a really small head (microcephaly). He was also a quiet baby who very seldom cried (which was odd for a foster baby). He didn't seem to like to be cuddled or even touched. He was most content just being left alone. He was not very interested in his bottle and actually was very difficult to feed.  He was jaundiced (like most newborns are) but even after a few days home, he wasn't turning pink like most newborns do.  He just seemed to get more yellow with each new day.

I called my pediatrician's office and made him a newborn well check appointment. I had to see a different doctor because mine was out on maternity leave. I carried Blaze in for a checkup and shared my concerns, but the doctor didn't seem that concerned at all. She brushed off most of what I brought up. She noted that he did have a heart murmur, but she said that they would recheck that at his 2 month well check. He was a  little more jaundiced than his hospital discharge papers had said, but because he was early she wasn't that concerned. She mentioned that his head was small, but that they would keep an eye on that. I  pointed out a couple of red dots that he had on his belly. She wasn't even concerned about that. She said the dots were probably just going to be birthmarks. She said that his system was just immature and probably just needed extra time to catch up. I took him home and watched him closely. Over those next couple of days, he seemed to get sicker acting and looking. He also developed more spots (By age one he had over 70). They turned out to be hemangiomas (strawberry marks) which are pretty common, except for the large amount that he had.

 

By week two, I knew without a doubt that something was wrong with our baby. I called the pediatrician's office back. Thankfully, my pediatrician was back from her leave and was willing to work us in. She walked in and I explained to her all of the same concerns. The minute that I took off his clothes, she got this serious look on her face. She said, "His stomach doesn't look normal". She pressed on his tummy for a while and then called other doctors to come in. They talked among themselves (doctor talk). Then she asked if I could take him over to the hospital to the imaging center for some scans and lab work... I did. Then I went home and waited anxiously by the phone. She called and said that his blood work showed that his platelet count was below normal and his blood was not clotting like it should. The scans showed a hernia and that his liver and spleen were very enlarged. His liver was not functioning properly which is why he was so jaundiced and this was causing his spleen and liver to swell. Blaze was admitted into the hospital. He was a very sick little boy. After numerous tests, it came back positive for a condition called cytomegalovirus better known as CMV. Blaze's birth mom had CMV at some point in her pregnancy (most likely within the first trimester) and it had passed to Blaze.

CMV wreaked havoc on our little boy's system and affected many of his organs. We were sent to see doctors all over the state of GA. He saw numerous specialists before we got the full picture of what our little boy was dealing with. We were told his CMV was on the more severe end and that he might not even live to be over 4 months old. If he did, he would probably never be able to set up, walk, talk, see, or hear. He would most likely be severely disabled.

CMV caused Blaze to have cerebral palsy (CP) with hypotonia, malformation of the cortical development of the brain, polymicrogyria, hippocampal sclerosis, thrombocytopenia, intractable epilepsy, microcephaly, mild hydrocephalus (doesn't require a shunt), hypoplasia of the corpus callosum, hepatic fibrosis, cirrhosis of the liver, splenomegaly, sensorineural hearing loss (bilateral), moderate vision loss, feeding disorder of early childhood with dysphagia, chronic digestive issues, gastroesophageal reflux disease (GERD), hemangiomas of the skin and subcutaneous tissues, bowel and bladder incontinence, global developmental delay, failure to thrive, and he has a dx of autism.

Blaze has been under the care of many specialists since birth. He is under the care of a hepatologist, neurologist, neurotologist, gastroenterologist, nutritionist, allergist, developmental pediatrician,  psychologist, ID specialist, audiologist, ophthalmologist, ENT, and a regular pediatrician, 

Yes! That is why we are always on the road. 

Blaze has also been in therapy (OT, PT, SLP, and Oral Motor) pretty much his whole life. He has been blessed with some amazing therapist who work VERY hard to help him to be all that he can be. He has also worked with the Babies Can't Wait Program (up to age 3), Emory Neuro-Development Center, Marcus Autism Center, Georgia Sensory Assistance Project, WGC Comprehensive Communication Clinic, and the GA PINES program. I truly believe if Blaze did not have the team that he has, that he wouldn't be where he is today. We are so thankful for them!

The Day We Said Goodbye!

Jan 19, 2014 
After 23 months, Blaze's liver functions had improved enough that he was released  from the transplant team at CHOA!!! 

 A doctor at CHOA once said, 

"Blaze looks way better in person than he does on paper". 

We are so thankful for that!

I'm so glad that doctor's don't know everything! 

With time, Blaze learned to set up, crawl, walk, and he signs to talk! He done these things in his own time.

Blaze's birth mom surrendered 

her rights to him and on 

Oct 23, 2013 we adopted 

Our Little SUPERHERO!

One thing Blaze has taught us is that diagnosis are just labels. They do NOT define who he is as a person because he is so much more! I share his story to show you just how amazing he is and just how far he has come! Despite all of the obstacles that life has thrown at him, he never gives up! Blaze is a fighter! He is a survivor! He is a kid! A GREAT kid! He is funny, he is adorable, he is silly, he is curious, he is LOUD, he is mischievous, sometimes stubborn, but almost always HAPPY! In many ways he is just like any other kid his age. He has filled our lives with so much joy!  Right now, Blaze is not aware that he is a little different. He will probably have to do things and learn things in a different way than most, but that's OK. I want to teach him that it's Ok to be different, because really we all are. God makes NO mistakes. God has a plan for our little man. We may not see it now or even begin to understand it, but God does. God knows Blaze by name and loves him dearly! Blaze is fearfully and wonderfully made! Psalm 139:14

More info to help you better understand what makes up our AMAZIN' little boy. Click the link below to learn more about these conditions. 

Cytomegalovirus CMV

Cerebral Palsy 

Malformation of the cortical development of the brain

Polymicrogyria (bilateral)

Hippocampal Sclerosis

Hypotonia

Epilepsy (4 types of seizures/ intractable) 

Hypoplasia of the Corpus Callosum
Microcephaly
Hydrocephalus (mild does not require a shunt
Thrombocytopenia

Hepatic Fibrosis

Cirrhosis of the Liver
Splenomegaly
Congenital Hernia

GERD
Food Allergies 
Hemangiomas of skin and tissues
Dysphagia
Feeding Disorder of Early Childhood
Failure To Thrive
Global Developmental Delays
Autism
Sensory Processing Disorder
Sensorineural Hearing Loss
 Deaf-Blind Defined
Deafness and Hearing loss
Low Vision and Blindness explained
Carnatine Deficiency
PICA
Nystagmus
Strabismus
Exotropia
Hyperopia

Blaze is now 7 years old!

He is doing very good!

He continues to make progress

and amaze us every single day!

Copyright © 2020 Sandy Howell

And they said that he would never talk...

What My Special Needs Little Boy Has Taught Me...

What My Special Needs Little Boy Has Taught Me...

1. It's not about how fast you reach a milestone. We are not in competition. It's about setting goals and giving it all that you have until you reach your mark.

2. There is more than one way to do most things and it's ok if you don't do things like everyone else.

3. Raising a special needs child opened a whole new world that I never really knew existed. It's full of amazing, unique, and strong people that have endured some of life's hardest tests and have overcome things that most can only imagine.

4. I am learning a second language (Sign language). You really can teach an old dog new tricks!!!

5. Some of your biggest support as a parent of a child with special needs will come from complete strangers who have walked the road before you.

6. I learned I am stronger than I ever imagined I was and my son is even stronger. He is my SUPER HERO!

7.  Education is not a, "ONE SIZE FITS ALL" kind of thing and IEPs can be very complicated.

8. Everything is beautiful, exciting, and interesting if you will only slow down long enough to take a closer look at things.

9. Blaze has made me an expert calendar keeper and time manger.

10. Just because they don't kiss you or hug you doesn't mean that they don't love you. Actually, special needs kids can love very deeply even though they may not physically show it.

11. Not every day is good, but if you look a little closer you will find something good in every day.

12. Not everyone is going to care about and love your child as much as you do and that's ok. That just gives you a good excuse to love them twice as much + plus some.

13. If someone tells you that it can't be done, it's up to you to prove them wrong.

14. It's ok to be different, it makes life more interesting. God makes some of us a little different to offset the excessive number of boring people on earth.

15. I learned that horse therapy is called hippotherapy. Imagine my face when they suggested Blaze starting  hippotherapy. Do what? ummm...sorry but my kid is not going anywhere near a hippo.

16. Doctors don't know everything. Sometimes moms really do know more!

17. Miracles do still exist! I have one and I call him my SON.

18. We have more than 5 senses. I bet you didn't know that! Me neither, until I met my amazing Blaze. School has taught us wrong all of these years.

19. Being deaf/ nonverbal does not mean quiet. Actually, Blaze can be very loud at times. If you are around us and Blaze gets loud please know that I am aware and that  I will do my best to get him to quiet down but PLEASE understand that he doesn't realize he is being loud. Remember he is deaf. When he makes noises it's because it feels good to him.

20. There really are angels among us. They often come disguised as PTs, OTs, SLPs, teachers, and advocates. People who really do care and have a heart. Blaze has been blessed with some of the best over these last 7 years. I can't imagine where we would be if they had not been with us every step of the way.

21. Patience is a must. Just don't ever pray for it because God will grant it in ways you may have never imagined. I'm proof!

22. Blaze has taught me courage. I've had to be strong and stand up for what I think is right and best for my son and at times it hasn't been easy. Who am I kidding??? IT'S BEEN DOWN RIGHT HARD (Doctors, treatment plans, school districts, teachers, laws, rights, etc).

23. It's ok to ask for help. The hardest for me is admitting that sometimes I really do need help. It's ok sometimes to ask for help from others. It's ok to ask questions about the things you don't know or understand (even to ask them to repeat it three more times when you still don't get it). It's also ok to ask for a break from time to time, and it's even ok to vent as needed.

24. I can drive in Atlanta!!!! Imagine that. I would have never dreamed I'd drive in Atlanta traffic. Now, I do it all the time. I'll do anything for my little boy to make his life better.

25.  Every child has potential sometimes they just need one person to believe in them.

Dear Special Needs Little One...

Dear Sweet Child,

Today a fighter was born. You. Yes, you. The sweetest, tiniest, most precious little soul. You are strong, brave and full of courage. I’d like to welcome you to the world and tell you a little about what to expect on your journey. It may be a confusing time for you. Machines monitoring your progress, your parents’ tears falling gently upon your delicate skin and doctors swirling around you. Never fear, you are loved. You will soon find clarity and your purpose. Life for you will be a little different than it is from most. You see, you were born special.

There will be days in your life when you will reach for the stars and other days when you will feel defeated no matter how hard you try. There will be triumphs and celebrations and at times unexpected set-backs. Your life will be a tender balance of difficulties and joy. But you will undoubtedly do amazing things. You have a gift to light up dark rooms, to speak without words, to inspire others and to demonstrate unconditional love. But the world won’t always make it easy for you to shine like the star you were born to be.

There will be times when you are met with cruelty. Stares, hurtful words, uneducated people and those who cannot yet see the beauty that is before them. It may make you feel lonely or worthless, but you must remember you are far from those things. Your heart will be wounded at times, but you need to know you are never alone. Because your heart is so big, you’ll be quick to forgive. You’ll teach more lessons in one minute than some can learn in a lifetime.

The world around you will occasionally be complicated and messy. You may hear predictions about your destiny and have expectations placed upon you. Remember you are defined by none of it. There are no limits to what you can achieve and accomplish. No one can determine what you will be capable of during your journey. You will be a surprise each day to those around you.

There may be scary and hard times too. You may experience a multitude of medical procedures, endure countless hours of therapy and even accumulate various types of assistive devices to help you along in your day. There will be a team of those loving you through those times, and they will bring you comfort to see you through all of it.

You are going to do so much with your time here. It is not about what you can do or can’t do that will define your life. Spreading love will be your specialty. You may encounter hate, spite and ignorance, but the love within you will be stronger than all of it.

We’re really glad you’re here. Your life brings so much value to the world. You might need a pep talk sometimes and that’s OK. We all need that from time to time. But no matter what, remember never give up hope that things will be better tomorrow.

For now, remember this: When you feel low on smiles and you feel it’s over before you’ve had a chance to begin, dig deep and remember your purpose. Laugh loud, live in the moment and dream big and most of all remember you matter in this world.

Love,

Stacy, Chris, Noah and Luke

This post originally appeared on Noah’s Miracle.

I read this letter on another blog and it brought tears to my eyes. I can so relate to the feelings this parent has. I've watched my little boy go through so much over these last 2.5 years. He has came a long ways, endured so many procedures, test after test, therapies, and hospitalizations. Some see him and don't realize what all he's been through. Others see him and wonder why he is the way he is. It's hard....sometimes very hard. Especially when I see him struggle and I know that I can only do so much to help him.
  However, I am so thankful that God chose me to be the mother of this amazing little boy. He is my superman. He has fought battles that most can't even begin to imagine and he has been through more than most adults go through in their whole lifetime. He's going to do amazing things... I knew it the first day that I met him. God has amazing plans for my Blaze. Just set back and watch my little superman fly.