Wednesday, August 10, 2011

Our Testament

March 29th was probably the most difficult for Brian and I when dealing with the overwhelming feeling of having no control in Deacon's future. It was our rock bottom.

It is in that time when you get to a place that you throw your hands in the air and give up doing things on your own. We finally realized that we could do all we could as Deacon's parents, but the most important thing was to give our struggles and desperation to God.

That day this verse became my mantra:

"Have faith in God. Truly, I say to you, whoever says to this mountain, 'Be taken up and thrown into the sea,’ and does not doubt in his heart, but believes that what he says will come to pass, it will be done for him. Therefore I tell you, whatever you ask in prayer, believe that you have received it, and it will be yours."
Mark 11:22-24

Our pastor summarized with: Don't tell God about the mountains in your life, tell those mountains about God.

Around this time my Aunt Bonnie mailed us this book, after the family visited her church:

They wrote about their healthy daughter becoming ill and needing to have her heart removed. She was hooked up to a machine that was outside of her body and worked as a temporary heart while they waited in an out of state hospital for months for a transplant. The family was split apart, had days with poor prognosis, but continued to stay strong in their faith.

I started reading this book on April 4th, after my students finished their state testing. On April 4th Deacon stopped having seizures and we haven't seen one since. It has been 4 months!

Coincidence?? Deacon had been on the same prescription for a couple of months and had no changes in it. This was also less than a week since our "rock bottom." Believe what you will, I have no doubt this was God.

Need more proof of the miracles we have experienced:

Diagnosis: Seizures
February 17th - We were told Deacon had Infantile Spasms and a 90% chance of being mentally retarded, and high mortality rate.

March 29th - Doctors told us they were wrong after 23 hour EEG, Deacon did not have Infantile Spasms, instead Myoclonic Seizures. Myoclonic seizures had about the same prognosis, the goal being to reduce number of seizures, but complete seizure control would be difficult.

April 4th - Seizures stopped!

Diagnosis: Vision Problems
January 10th - Deacon needs glasses.
February 24th - Vision specialist told us Deacon does NOT need glasses, but that he has cortical visual impairment.

June 24th - Vision Specialist can hardly believe Deacon is the same kid! Told us all fixing, following, and visual attention had significantly improved!

Diagnosis: Developmental Delays
February 1st - Deacon qualifies for ECI services for developmental delay. At about 12 months of age, he was at the development of about a 6 month old and had regressed in some areas and platued in others. He could not feed himself, had no interaction with toys or people, language had completely disappeared.

July 20th - Deacon's re-evaluation. In six months, Deacon has had 6 months of progress! He is now developmentally at at about 12 months is drinking from a sippy cup and feeding himself, plays with toys and people, and is making sounds again!

Diagnosis: Autism
June 14th - Neurologist diagnosed Deacon with Autism.

July 12th - I haven't even shared this with y'all: DOCTOR RETRACTED AUTISM DIAGNOSIS!!! He said Deacon was much too affectionate and interactive for him to believe that Deacon had autism like previously believed.

So let me remind you of God's promise:

"God will bless you, if you don't give up when your faith is being tested. He will reward you with a glorious life, just as he rewards everyone who loves him."

James 1:12


Alberson said...

I am so very very happy for you and your family. Deacon is so very lucky to have such an amazing family surrounding him not only with their love but with the lords as well!

Anonymous said...

what an amazing story!

Anonymous said...

I found your blog on after googling infantile spasms. And this is exactly what I needed to hear. My 5 mth old was diagnosed with this on monday. He was admitted to the hospital to start aggressive treatments. Thank you for your words. I do not know you but you have blessed my heart. I pray your son continues to thrive as well as mine to begin to. Thank you again.

The Scott Family said...

I don't know why I am just now seeing your comment! Thank YOU! This is the exact reason I write this blog! My first google searches of infantile spasms brought back some horrific stories, and even the "optomistic" ones were still pretty frightening. Praying for you, your family, and especially your son! (and most importantly: trust your gut, even if your family or doctors act like you are crazy!)