Epilepsy Awareness...

March 26 is considered purple day. A day set aside to educate the world about epilepsy. As you may know our son Blaze was diagnosed with epilepsy as an infant. Seizures have become a part of our daily life...unfortunately. It is very life controlling and something we have to be aware and prepared for 24/7. So today, is a good day to educate our family and friends on this very scary thing called epilepsy. Education is the key. Education can save a life.

Our son was diagnosed as an infant with simple partial seizures.

As he grew into the toddler years, his seizures changed 

and he was diagnosed with complex partial seizures.

At the age of 6,

his seizures became more frequent and severe.

He also developed more types of seizures.

He is diagnosed with

Intractable Epilepsy.

He has had a combination of

 Complex and Simple Partials,

Generalized seizures with status epilepticus

as well as,

 Tonic Clonic, Drop,

 and Absence Seizures.

He has been hospitalized numerous times

over the last year because of epilepsy.

It truly does control a person life

He is now on 3 seizure medications

and wears a monitor. 

Click on pictures to enlarge

Types of Seizures

Seizure First Aid

Click picture to enlarge.

He is getting better ever day!....

It has taken over three years and hundreds of therapy sessions to get to this point. We are pretty excited about it. He is getting better every day. Look at my baby go! I am one proud mom.

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

He is a SENsational kid!...

This was our daily update to Mrs Cindy, Blaze's buddy over at www.whoirun4.com 

Today Blaze has worked VERY hard in OT and PT. He worked mostly with sensory boxes. He even set in one of the boxes, which made his OT VERY happy ,because it was full of sensory stuff that would normally gross Blaze out and send him either vomiting or in a melt down. Not today! 

He also matched all the balls to the right colored baskets, put puzzles pieces in their correct places, and stacked boxes. This was by far his best day ever in OT. His OT was so excited today. She just kept hugging him and bragging on how far he has come.

 In PT he worked on his balance and strengthening his legs. He enjoyed his PT rolling him up in a blanket and swinging him back and forth. He still struggles with movement he can't control, but  today he did great. Now every time he sees a blanket he wants me to swing him in it. We will all have sore arms tomorrow:) Now, he is napping. It's been a good day!

 Trust in the LORD with all thine heart;and lean not unto thine own understanding. In all thy ways acknowledge him,and he will direct thy paths. ~Proverbs 3:5-6

Will he walk?...

After waiting almost 2.5 weeks we finally got the results from Blaze's brain MRI. Dr Keller called on Tuesday to discuss those with us. She said, Blaze's brain showed several white spots/matter on both sides that she believes to be scar tissue left from the CMV virus that he was born with. She also said the corpus callosum part of the brain was not as it should be so she diagnosed him with cerebral palsy which is probably the reason why my precious baby isn't walking. Most likely the CP was also caused by CMV. I asked her if she believes Blaze will walk. She said, she believes he will...eventually. She said, maybe not this week, next month, or possibly this year, but she believes he will. She said she is very pleased with how well Blaze is doing. He is way better than she first predicted and much better than most of the CMV babies that she sees. She told us to keep doing exactly what we are doing (therapy, therapy, therapy and lots of TLC).  Also, the good news is that his brain won't get any worse than it is. It will only get better from here. The neat thing about the brain and also the heart is that they can find ways to bypass damaged areas and create new routes and connections. I thought that was pretty neat. The body is an amazing thing.

She also said that she believes Blaze is autistic. She referred us to the Marcus Center. The same place Baby Girl (our past foster) went. We are going to go ahead and start seeing a developmental pediatrician, while we wait to get in at the Marcus. The wait for Marcus can take up to a year, but it's well worth the wait. I wouldn't want to go anywhere else. It's the top place here in GA and the SE. 

The results weren't what we hoped for, but I wasn't totally surprised either. It answered many of the questions that I've had floating around in my mind concerning my little boy.  At least now we have some answers and now we know what we are working with. 

 Trust in the LORD with all thine heart;and lean not unto thine own understanding. In all thy ways acknowledge him,and he will direct thy paths. ~Proverbs 3:5-6

June is CMV awareness month...

June is CMV awareness month.

I had never heard of CMV until our little boy was diagnosed with it shortly after birth. I had never heard of a virus that can disable children. Little did I know that when we got our little boy (we adopted him) that he was very sick.  CMV has changed our lives forever.

Our little boy's story is posted here, "Joshua's Story"

More info on CMV

What is CMV?
Cytomegalovirus (CMV) is a common virus that infects people of all ages and is usually harmless to people with a healthy immune system. Most people have been exposed to CMV at some point in their lifetime without realizing it. Most infections with CMV are "silent" or asymptomatic, meaning most people who are infected with CMV have no signs or symptoms. Once CMV is in a person’s body, it stays there for life.
What are the symptoms of CMV?
Most people don't realize that they have been infected with CMV because, usually, CMV produces no obvious symptoms. But symptoms of CMV infection can be similar to those of mononucleosis and include:

• High fever
• Fatigue
• General discomfort, uneasiness, or ill feeling
• Joint stiffness
• Muscle aches or joint pain
• Night sweats
• Prolonged fever
• Sore throat
• Swelling of the lymph nodes
• Weakness
• Loss of appetite
• Weight loss

What is congenital CMV?
Congenital CMV infection occurs when a pregnant woman is exposed to CMV and the CMV passes from the pregnant woman to her unborn child, causing birth defects and developmental disabilities. According to the Centers for Disease Control and Prevention (CDC), CMV is the most common congenital (meaning from birth) viral infection in the United States. 
How common is congenital CMV?
1 in 150 children is born with congenital CMV in the United States. More children will have disabilities due to congenital CMV than other well-known infections and syndromes, including Down Syndrome, Fetal Alcohol Syndrome, Spina Bifida, and Pediatric HIV/AIDS.
What happens to babies who are born with CMV?
Permanent health problems or disabilities that may occur due to congenital CMV infection:

• Hearing loss
• Vision loss
• Mental disability
• Feeding issues/Failure to Thrive (FTT)
• Sleeping issues
• Sensory issues
• Behavior issues
• Small head/small brain (Microcephaly)
• Intercranial calcifications
• Lack of coordination
• Cerebral palsy
• Seizures
• Death

(Note: If a newborn is diagnosed with congenital CMV, it does not mean that they will necessarily develop the above listed health problems and/or disabilities.)
How is CMV spread?
CMV is spread from one person to another, usually by close and prolonged contact with bodily fluids, including urine, saliva, and tears. CMV is very common among healthy children 1 to 3 years of age who are at high risk for contracting CMV from their peers. Contact with the saliva or urine of young children is a major cause of CMV infection among pregnant women, especially mothers, daycare workers, preschool teachers, therapists, and nurses.
Can CMV be prevented?
Yes. Here are a few simple steps you can take to avoid exposure to saliva and urine that might contain CMV:

• Wash your hands often with soap and water for 15-20 seconds, especially after changing diapers, feeding a young child, wiping a young child's nose or drool, and handling children's toys
• Do not share food, drinks, or eating utensils used by young children
• Do not put a child's pacifier in your mouth
• Do not share a toothbrush with a young child
• Avoid contact with saliva when kissing a child
• Clean toys, countertops, and other surfaces that come into contact with children's urine or saliva

Should I be tested for CMV?
If you have symptoms of a CMV infection, blood tests can identify special proteins in your blood (antibodies) that are created by your immune system to fight off a CMV infection. The virus can also be detected by culturing or by a polymerase chain reaction (PCR) test from blood, other body fluids, or a tissue biopsy.
Are there treatments that can help?
Yes. For pregnant women, recent studies are working to determine whether CMV hyperimmune globulin treatment may reduce the risk of congenital infection and/or neonatal disease when given to pregnant women experiencing a primary CMV infection. For newborns, Ganciclovir and Valganciclovir are antiviral treatments that may be beneficial to a newborn with symptomatic congenital CMV, possibly preventing hearing loss and improving head and brain growth. Newborn treatments generally last from 6 weeks to 6 months and are administered orally or through an IV or PICC line. For more information, contact treatment@stopcmv.org. 
Is there a CMV vaccine?
Not yet. CMV vaccines are still in the research and development stage. Many experts believe that a CMV vaccine is possible within the next 10 to 20 years, but a CMV vaccine is unlikely to occur without the awareness and support of the general public, the pharmaceutical industry, and the federal government.

Resource www.stopcmv.org

 

Trust in the LORD with all thine heart;and lean not unto thine own understanding. In all thy ways acknowledge him,and he will direct thy paths. ~Proverbs 3:5-6

Update on the babies...

Just stopping by with another update. We've had 2 of our foster babies in the hospital this week at 2 different hospitals. Brylee has been there for two weeks to be weaned from her ventilator and for us to be trained on her equipment so that she can come home. She is doing great but ready to get out.
 We were going to finish everything on Friday, but Friday morning BB woke up with a 102 fever. I took him on to his pediatrician and they told me to go ahead to the ER with him. At the ER they ran tests and found his white blood count was way to high, he had a 103 fever, a heart rate in the 200's and a pulse ox that dropped down into the 70's -80's. They told me he needed to be hospitalized at Children's in Atlanta, because he was really sick. We tried to get him placed in the same hospital as Brylee, but that hospital had no beds. They then called the other Children's hospital in Atlanta and they said they were full too. They told us they would need to fly him to Birmingham or Chattanooga to an ICU unit. So we waited to hear back from those when Atlanta called back with a bed available. They took him by ambulance to Egleston Children's. It seems Blaze had caught a cold and it went to his lungs. He had double pneumonia & a flu type virus. We got released last night and he is sooooo much better. We are glad to have him home, but we are sad that we didn't get our classes in so Brylee could come home too. She is still in Atlanta. It's been a trying time for all of us. We've for sure had to work together as a family by rotating shifts, etc.
The hospital said this is the earliest they've seen the flu season start and they can't imagine what fall & winter are going to be like, because all of our hospitals here in GA are full of sick folks. It does concern me with two special needs babies and we are going to have to work extra hard to keep them well.
As for this week, our goal is to get everything done for Brylee. Please keep our family in your prayers.









Trust in the LORD with all thine heart;and lean not unto thine own understanding. In all thy ways acknowledge him,and he will direct thy paths. ~Proverbs 3:5-6

Update on our foster baby BB...

Today we took BB to see an ENT about his hearing. We didn't get the results we hoped for. He said, due to BB's health issues he is not a candidate for the cochlear implants. He is sending him to another doctor for hearing aids, but he said that he really doesn't think BB hears enough to be benefited by hearing aids. He pretty much said this will be a sign language case. This was not what we hoped for. Honestly, we hoped that we would go in and they would say it was just wax build up or fluid in the ears ,but it turned out to be neither of those.
Please pray for our sweet boy. I still hold on to hope that maybe with hearing aids he will hear at least some. However, if he can't then we will be starting some sign language classes. We will do whatever we can to help him.
BB has been through a lot in his short 3 months of life, but he has proven to be the most patient and strongest little guy I know. He has such a laid back personality. He's just AMAZING. What a precious child God has given us to work with. I am thankful because God has shown me many things through this little boy. I truly believe he was meant to be here with us.


Trust in the LORD with all thine heart;and lean not unto thine own understanding. In all thy ways acknowledge him,and he will direct thy paths. ~Proverbs 3:5-6

Have you heard of CMV?

Have you heard of the disabling virus? Well chances are your answer is no. Well neither had I until my precious foster baby was diagnosed with it at age 2 weeks.

When baby BB came to us, he was 2 days old and was thought to be a healthy newborn. Little did I know he was sick...really sick. It took me just a couple of days to figure out something wasn't right. He couldn't suck a bottle well. It would take him hours to drink 2-3 ozs....even with several holes in the nipple. By the time I got him fed, it was time to make him another bottle. His soft spot sunk in twice from dehydration. He was jaundiced...he still is. He had a really tiny head and a low birth weight for a baby born only 3 weeks early. His head was tiny but his tummy was huge. It looked like if you touched his tummy that it would pop...his liver & spleen were swollen and still are.  He had low blood levels. His blood platelets were off...they still are. He  started breaking out in hemangiomas and now has 50+ from head to toe. He had other strange body movements like rolling of eyes, shaking his head from side to side (over and over), not responding to noises, no eye contact, balling up his fists until they would turn purple, pulling his arms as far behind his back and holding them there, turning his neck as far backwards as possible (over and over), having a stiff body (when he should be curled up), etc

He is now 2 months old. 
Since coming to us he has been through lots of testing...

He has been in four hospitals.
He has seen numerous doctors.
He has been seen by the CDC.
He has had several sets of labs.
He has had 2 ultrasounds.
He has had a spinal tap.
He has had a CT scan.
He has been seen by an opthamologist, infectious disease doctor, GI doctor, a neurologist, and a audiologist.
He is being considered for an experimental drug.
Babies Can't Wait is on his team now along with 3 therapist
He is also on a waiting list for CMS.
....As I said, I've been one VERY busy foster mom:)

He is now waiting for his next trip to be approved by medicaid for an MRI of his brain and digestive system and an audio test of his hearing. These will be performed at Egleston Children's hospital in Atlanta.

This little guy has been through a lot. He has a long road ahead of him. We won't know until he is older just exactly how much damage may have been done.

If you are an expecting mom or a future expecting mom PLEASE learn all you can about CMV. Every expecting mom is at risk of this infection.  No OB/GYN will tell you about and they do not test you for it. However,it is the leading cause of childhood disability. Thousands of children are born with it every year and 1 in 5 will be permanently disabled. No child should EVER have to go through what our little guy and many other children have.

Please take the time to learn about it.
www.stopcmv.org
http://congenitalcmvfoundation.org/index.htm

.
Trust in the LORD with all thine heart;and lean not unto thine own understanding. In all thy ways acknowledge him,and he will direct thy paths. ~Proverbs 3:5-6

Our Little Foster Baby...

All about Little BB...

We have the tiniest most precious foster baby ever. I mentioned him in my last post ,but I haven't really just posted about him. He is 2 weeks old now. He finally hit the big 6 pound mark. He has gained a whole pound since being here. He is 18 inches long now.
He had a tough start in life. He came to us drug addicted like most of our other foster babies. Besides the drugs, I knew from the start that something else wasn't just right with him... so the doctor visits started.
4 trips to the doc, numerous blood draws, and 1 sonogram later we still have no clue exactly what is wrong with out precious baby.
Everything the pediatricians has thought that it might be, a blood test would prove wrong. We have been thankful for every "It's not that" result. However, we are baffled.

When he was 5 days old I took him for a routine newborn well check. I noticed he was very yellow (like most newborns) and he was having constant poop diapers...like 4 or 5 every hour around the clock, which led to a horrible diaper rash from the constant changing & wiping. The doc felt the poop was just due to his system being early and immature and he was jaundiced but she felt it had peeked and would go down from there. So we set a new appointment for a 1 week re-check. On day 8, I noticed he had a few little red spots that popped up on his tummy. I thought they were probably baby acne ,but they grew. So then I thought they were probably birth marks and didn't think to much more about it.  By the time we took him back for the one week recheck he had over 15 red spots and he was more jaundiced. His doctor looked at him and said "this is not normal" we've got to run some tests. He either has this, this, or this. I asked her, "What if the tests come back and he doesn't have any of those?" (trying to think positive). She said, "I don't expect that to happen". I walked out of that office and broke down. Why do things like this have to happen to little innocent babies. It was a tough day. The first round of labs all came back clear except for the clotting one. He does clot a little slower than normal ,but she doesn't believe that's it.

Today, we took him back. He now has over 40 hemangiomas ( red spots) on him. They start on his feet and run to his neck. So far he has none on his face. His jaundice had went down ,but today they noticed that he had a really bloated tummy. I've mentioned it every visit but they haven't really said anything about it until today. The doc decided to send him for a sonogram and they done several more tests. We also saw a second doctor for a second opinion (at request of the 1st doc) and she believes he has a swollen liver.
Now we have to set and wait and pray that the tests come back and shed some light on what is wrong with our boy. The doc said if this round of tests come back normal then she is sending him to Children's in Atlanta. She said there they have all the tools and are able to diagnose odd conditions that some children have....hmmmmmm  So I guess she thinks my baby has some weird condition. Please pray for him. Pray for healing. Pray for a proper diagnoses. This is new to me. I've had other sick foster children but they came to me diagnosed and we knew what to expect, but with him we have no clue. Is it fixable? Is it life threatening? Should I just ditch my docs and take him on to Atlanta on my own? Our little guy needs lots of prayers.

(If you look real close you can see the first tiny spot on his tummy. Well that was his first spot and it is now the size of an eraser and bright red. Each spot started out as tiny little spot, but they grow and every day he has gotten more and more)

This little baby has kept me busy for the last two weeks, but I'm not complaining. God has given us another little miracle to work with and we will not give up until we have an answer for our precious foster boy.

Trust in the LORD with all thine heart;and lean not unto thine own understanding. In all thy ways acknowledge him,and he will direct thy paths. ~Proverbs 3:5-6