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

Misdiagnosis

It's NOT Infantile Spasms.

Are we thankful we got another opinion after this guy told us that it was Infantile Spasms, despite having the data to back it up? Absolutely!

Are we celebrating? Unfortunately, no.

Yesterday was a long one. We were scheduled to be admitted at 11:00am. At 10:30am we were driving to the hospital when we received a call saying they were on "orange status" meaning there were no available beds and that we would have to come the following day. I explained that we were already on our way, and that Brian and I had both taken off of work. After they made some phone calls, we were told that they would make room, but nothing would be available until 2:00pm.

My mom is watching Carson while we are in the hospital, and planned to go to the zoo, so we decided to join them while we passed the time. I am so glad we started the day enjoying the cool weather and having a great time with the boys.

We made it to the hospital, checked in with admissions and were on our floor by 2:00pm. The room was still not ready, so we waited. Some time around 4:00pm we got in our room. Deacon was so exhausted from the busy day, we were hoping he would sleep through the electrode placement. I think he was too exhausted from our busy morning and being messed with was the last thing he wanted, especially since it took over an hour for all of the wires to be attached with the extra strength glue that was used. He cried pretty much the entire hour we held him in place.

After he was wrapped securely he tried to sleep, but just could not get comfortable with the wires, and people coming in taking stats and asking questions. His huge metal crib (really?? a metal crib for kids with seizures??) shook loudly every time he rolled around making it even more difficult, and couldn't snuggle with blankets like he usually does because they need to see all of him on the video camera. To add to our luck, he also has what seems like a cold, and has been running a low fever with runny nose and cough.

He was finally about to dose off at close to 10pm when the nurses came in to draw blood and put in an iv. By that point I was drained too, and cried along with him as we held him down AGAIN to fill up 6 viles of blood and insert the iv.

Brian and I slept on the full size pull-out couch along with Deacon, who stayed on top of the covers and in full view of the camera at all times. lol

This morning we were told by the attending Neurologist that the EEG does not support the diagnosis of Infantile Spasms. They have seen 3 seizure-types since we have been here: myoclonic, atonic, and epileptic spasms. Having more seizure types make seizure control more difficult.

The information I was able to drag out of the doctor didn't sound promising. Because of the slow background on his EEG/developmental delays, it rules out the better end of the spectrum for myoclonic epilepsy. The doctors don't know what exactly it is, or the cause, because it isn't "classic" symptoms for types they have in mind, and we were even told that there is a chance we may never get a clear cut diagnosis and that at any time new seizure types could come and diagnosis could change.

They have sent the bloodwork off for more B12 testing, that we should get today or soon after, and genetic testing that will take about 30 days. So, we are continue to wait for answers. I have done a little research online and read some terrible prognosis, up to severe dementia requiring institutionalization and have forced myself to stop.

We went to an amazing service at church on Sunday and this verse has been running through my head since:

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.

So that is what we are doing. God has already tackled the Infantile Spasm diagnosis, now we are praying for another dose of bad news to be shot down by Him.