Evan continued to grow and was meeting all of his milestones well in advance.  He began walking as soon as he turned 9 months old.  He was saying words like "soap" and "hold this" and duck" at 9 months old too!  This had to be the smartest kid in the world!  He had a flair for music and was dancing all day long. 

 

When Evan was 18 months old, my second son Aaron was born.  Evan and I would schedule some Mommy and Me time where we made a lot of friends and had some "alone" time together.  He really loved that.  Aaron and Evan are polar opposites!  Evan being laid back, take it as it comes, never whined or threw temper tantrums , and very inquisitive.  They were very close, they still are.  But it was nice to have Mommy and Me for Evan and myself.

 

By the time Evan turned 2 years old, he was advanced beyond his years.  We got him a violin for his birthday which he was learning to play and truly enjoyed it.  He also had a passion for tap dancing and would tap day in and day out all over the house.  There are still scuffs on the tile floor! 

 

When April of 2006 rolled around, Evan caught some kind of "flu bug".  Both of the kids were always very healthy!  Niether of them ever had very many colds, especially Evan.  I took him to the pediatrician to get checked out and he checked out okay.  He didn't seem to get any better though.  We returned to the pediatrician and were sent home again with a diagnosis of "viral illness".  A couple of days passed and things were not changing.  He seemed okay one minute and then he looked horrible.  We returned to the pediatrician 2 more times where I demanded blood work and cultures.  Again, were were sent home....this time being prescribed a drug called Phenergan (for vomiting).  Evan started vomiting and I was to give Phenergan to him to make it stop.

 

Well, the vomiting continued and the Phenergan was given.  The medicine made Evan sleep.  We couldn't tell if it was the medicine making him that tired or if it was the sickness making him that tired.  He continued to vomit. 

 

It was Sunday April 23, 2006 and Evan had been sleeping too long.  I called the pediatrician and the office was open.  We brought him in.  She looked at him and checked him over.  She told us that he has the same thing that every other kid in the waiting room has and we had absolutely nothing to worry about.  She was very confident in her decision.  She told us to go to the grocery store and buy every flavor of gatorade that they have so that was he wouldn't get sick of drinking the same flavor.  We thought that sounded a little odd.  But she was the doctor.  She knew her stuff, right?  She told us that the Phenergan was making him sleep and it would wear off.  At this point, Evan was still easily arousable and was following commands and walking around so we took him home.

 

A couple of hours later I tried to wake Evan from couch.  I got absolutely no response.  His eyes were not looking at me, but through me.  He was completely limp.  My husband and I immediatly grabbed Evan and our 9 month old son Aaron and raced off to All Children's Hospital. 

 

When we got to All Children's Hospital in Saint Petersburg, they took him right back.  The ER team gathered around him and began starting IV lines and questioning us.  Within minutes, he was in CatScan getting his brain scanned.  The scan results came back immediatly and showed that Evan's brain was hemmorhaging.  I remember when the ER doctor told me that.  I thought I was going to collapse.   Iooked down at my son and thought "oh my God, please".   Evan was put on life support and began fighting to live.

 

Over the next week and a half, the bleeding in his brain got worse and clotted off in his deep sinus vein causing a large thrombosis ( a stroke).  We were caught in a catch 22.  The doctor had to give him Heparin to break down the clot that could kill him but at the same time his brain was still actively bleeding and the Heparin was making it bleed more.  Eventually, the bleeding stopped and Evan stablilized.  But the damage was done. 

 

My beautiful son, still on life support, with tubes coming out of every opening, holes drilled through his little skull to relieve pressure, lay there motionless.  The neurosurgeon gaurenteed that my son would have extensive brain damage and that he may never leave the hospital.  There was no way I was going to let my son be a vegetable.  NO WAY!

 

We was truly blessed to have a great support team.  My husband, my Mother, my family and my great friends were behind us all the way.  Everyone was praying for Evan.  The power of prayer!  Yeah!  People who didn't even know Evan were praying...all over the world!

 

Evan was at All Children's Hospital from April 23rd through June 5th.  On July 5th, we were given the okay for him to be transferred to a rehabilitation hospital called HealthSouth in Largo.  He was taken by the All Children's Critical Care Transport Team On June 5th to Healthsouth were his rehabiltiation began.  Evan was still in a coma when he arrived as an inpatient at HealthSouth Rehabilitation Hospital.

 

Evan was a newborn again.  He could not hold his head up, he could not sit, roll over....literally, he was a 32 pound newborn.  He had "neuro cries" day and night.  Neuro cries are the brain's response to brain damage.  He couldn't control it and was kept litghtly sedated most of the time (or he would cry uncontrollably, contantly). 

 

Days turned into weeks.  Weeks turned into months.  My husband returned back to work.  My son Aaron and I had "moved in" to HealthSouth as we had our own room with an extra bed.  Evan slept in a metal industrial crib and Aaron slept with me in a hospital bed.  The staff at Healthsouth was wonderful.  Evan continued to improved but it was a slow process.  He didn't know who I was nor could he track a person across the room.

 

I remember one day, Evan's speech therapist, Nikki was playing Peek-a Boo with Evan and he smiled and laughed!  OMG!  We all cried!  I knew from that point on that Evan was going to be okay.  There was still part of the "old Evan" alive in there. 

 

On September 1st, 2006, Evan was discharged from HealthSouth Rehabilitation Hospital and we went home.  In a way, we felt like we were bringing home a new baby.  That panicky feeling set in.  We were overjoyed to have him home, but scared too.  He continued his therapies on an outpatient basis and continued to improve.  In November of 2006, Evan was walking independently!

 

By 2008, after having 2 years of therapy, Evan developed a seizure disorder.  (Each seizure that Evan has is completely terrifying to us, as parents)  Most of his seizures (called Grand Mal or Generalized seizures) resulted in a 911 call and a hospital admission.  It seems his seizures are hard to stop unless he is given a ridiculous amount of medication.  He continues to be on 2 types of seizure control medications as part of his daily regimen.  Some of his seizures have caused a great setback in  his recovery.  It sometimes takes him weeks or months to recover.

 

In 2009, Evan started Kindergarten.  As part of the Kindergarten protocol, vaccines are required.  The last vaccines that are required were given at 18 months so he hasn't had any in several years.  I took him for his vaccines but I told the doctor that I didnt' want to pound him with all 5 at the same time.  He agreed and we decided that 2 at a time was okay.  Well, not soon after, Evan had a huge seizure which resulted in 2 hospital admissions.  The MRI showed multiple lesions on his brain.  The EEG was showing signals from the right side of his brain which was not typical for Evan.  All of this was not typical of his normal seizure patterns.  A few weeks later, Evan was diagnosed with Acute Disseminated Encephalomyelitis (ADEM)....caused by his vaccines.   He couldn't walk, move, sit up, nothing!  He was given whopping doses of steroids to decrease the swelling around his brain which helped tremendously.  He improved!  I took him out of school and put him in "Hospital Homebound" mode where the teacher comes to your house. 

 

For the past several months, Evan has been recovering from ADEM and has almost made a complete recovery.  He has been excused from the rest of his vaccines.  Hopefully, he will be able to return to school soon.

 

Evan is nothing less than amazing.  He has survived the unthinkable.  I love him so much and there is nothing I would not do for him.  He has my heart.  We he struggles, I struggle....we all struggle.  But he is strong and determined.

 

Evan remains non verbal but we work on it through speech therapy.  The right side of his body is weak, his right arm is non functional.....but we work on that too.  Despite Evan's disablities, he is beautiful and we are blessed from our head to our toes.  We have proof that God is Great.  Evan is our miracle.