Amazin' Blaze: January 2019

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