Joshua Blaze's CMV Story....

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. He was a small baby (5 lbs and 18 inches long) with a really small head. 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 just wanted to sleep ALL of the time. He was jaundiced (like most newborns are) but even after a few days home, he wasn't turning pink like most newborns do.  He actually seemed to get more yellow each day. When I questioned the caseworker about him, she informed me that he was born a few weeks early ( at least 4 weeks early), his mom had no prenatal care, and drugs were present in his system at birth. That explained his uniqueness....I thought.

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 (It resolved itself). We discussed his yellow skin and the test showed that his jaundice level was a little more elevated than his hospital discharge papers had, but because he was early she wasn't that concerned. She mentioned that his head measured a little small, but that they would recheck that later. 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  just needed extra time to catch up. I left the office and prayed that she was right and that he would be fine.

Over those next couple of days he seemed to get sicker acting and looking. He also developed more spots. They turned out to be hemangiomas (strawberry marks) which are pretty common, except for the large amount that he had. By age one he had over 70.

My little peanut

By week two, I knew without a doubt that something was wrong with our baby. I called the pediatrician's office again. 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 that I had shared with the other doctor. 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 in to do the same. They talked among themselves (doctor talk). Then she asked if I could take him over to the hospital 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 were not normal and his blood was not clotting as quickly as it should. The scans showed a hernia and that his liver and spleen were very enlarged (grossly enlarged she said). His liver was not functioning properly and this was causing his spleen to swell. Blaze was very sick. He was admitted into the hospital. Blaze tested positive for a condition called congenital cytomegalovirus better known as cCMV. Blaze's birth mom had a CMV infection at some point in her pregnancy and didn't know it 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 (I'm glad they were wrong) 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, thrombocytopenia, 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, significant feeding problems with dysphagia, chronic digestive issues, gastroesophageal reflux disease (GERD), hemangiomas of the skin and subcutaneous tissues, bowel and bladder incontinence, autism, and global developmental delays.

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

Yes! That is why we are always busy and 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!!!!

All of these diagnosis are just labels. They do NOT define who Blaze is as a person because he is so much more!  A doctor at CHOA once said, "Blaze looks way better in person than he does on paper". We are so thankful for that! I share his story to show you just how amazing he really 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 did learn to set up, crawl, 

walk, and he signs to talk! 

He done these things 

in his own time.

Blaze 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

Blaze's birth mom 

surrendered

 her rights to him when 
he was 7 months old

and on 

Oct 23, 2013 

we adopted our

 little SUPERHERO!

~~~~~~Update Time!!!!!!~~~~~~

Blaze is five now and he is doing GREAT! His health is stable and he is progressing at his own pace! He still has regular follow ups with his specialists and he still has therapies weekly, but he takes it all in stride... He is awesome like that! He is in kindergarten now and he LOVES it! He is learning sign language to communicate and we are learning too! He is also learning to communicate with a communication device- Nova Chat (with people who don't know ASL). He continues to amaze us every day! We are so blessed to have this little boy!

More info to help you better understand what makes up our AMAZING little boy...

Cytomegalovirus CMV
Cerebral Palsy (mixed)
Malformation of the Cortical Dev of the Brain
Hypoplasia of the Corpus Callosum
Polymicrogyria
Hippocampal Sclerosis
Microcephaly
Thrombocytopenia
Hepatic Fibrosis
Cirrhosis of the Liver
Splenomegaly
Intractable focal Epilepsy
Hypotonia
GERD
Food Allergies 
Hemangiomas of skin and tissues
Dysphagia
Feeding Disorder of Early Childhood
Failure To Thrive
Global Developmental Delays
Autism
Sensory Processing Disorder

My friend Tracy over at www.cmvfoundation.org

created this ribbon for our Joshua "Blaze".

Copyright © 2016 Sandy Howell