best monday evah!

So today was a game changer. I know, I know there have been a lot of those in my life lately.

But this one, this one was pretty damn good.

Heck, it's the best news I have heard in months!

Things for Miss Courtney have taken a turn for the better.

No, not even a turn, she has defied the doctor's and their prognosis once more.

Today we met with our Neurology team at Georgetown to go over ALL the tests that have been done in the last three weeks since we almost lost Miss Courtney on Holy Thursday. There have been blood tests, MRI's, EEG's, genetic workups, PET scans, etc...etc...etc...

We were told two months ago that Courtney had 2-5 years to live. Her body has taken a beating over the last 19 years suffering seizures every single day of her life since she was five weeks old. We discovered she suffers seizures pretty much all day long with only the most severe breaking through. She has had aspiration pneumonia five times in her life leaving permanent scar tissue in her lungs. Her liver is under attack every day due to the anti-sezure meds she takes. Her kidney's were showing signs of shutting down. Her heart was working harder and was not able to keep up as well. She was tired and sleeping al the time. Her immune system was completely caput.

So what happened? What made the GUH Chief Pediatric Neurologist break out in a gig today in his office?

Well my Courtney has shown once again that God is in control and when HE is ready and not one second before, HE will call her home. The rest of us can go suck lemons.

Her MRI is normal. Yes, normal. 

There are no "dead" zones that we were told had to be there. No black spots of dead tissue. Her brain is smaller than a typical 19 year olds but we knew that given her seizure activity and developmental delays.

Her EEG was a typical EEG for someone who has seizures, but there was nothing life threatening on it. The cluster seizures she was having two weeks ago have been controlled with the new drug regimen.

Her liver and kidney functions are normal. No distress, no breakdown. Normal.

Her lungs still bear the scars of her previous battles with pneumonia, but they are working well. The scarring will always be there but they inflate beautifully and her oxygenation levels are 99-100%.

Her heart is strong. As long as the seizures stay at bay, it remains strong although with more strenuous physical activity she tires easily, so we still need to be careful.

The seizures...she went ten days without a grand mal seizure. Then she had one last night that lasted less than two minutes. She handled it beautifully without going into distress, breathing through the whole thing. No clusters, no drama.

Jerry and I sat there stunned as the doctor went over each and every test result. Dr. S just kept smiling. He was so excited to share the news.

"So what does it all mean?" I asked. "Do we send her back to school? Is she still as fragile as you said she was? What about the seizures? What does it mean? I don't understand. You said she would die within 2-5 years because of all the stress on her body. What are you saying?"

He smiled and said "I am saying that your daughter has once more defied the odds and turned things around. Her immune system is still highly compromised so you will need to bring her home where you can control her environment better and allow her to get stronger in time. But the 2-5 year thing...all bets are off. As long as we can keep the seizures at bay with this new drug regimen, she will get stronger, she will be more aware of her environment and she will be able to laugh, babble and participate in her world. For now, she's doing better than I could ever imagined. I promise in the future not to discount her tenacity or her stubborn will to live. The prayers didn't hurt either."

For now she is doing better than I ever imagined...I promise not to discount her tenacity or her stubborn will to live...the prayers...the prayers...

Tears streamed down my face and Jerry and I just sat there. Then there were hugs and high fives and MIss Courtney laughed.


One more time, we have been granted a miracle and I have no idea why.

I have no words to explain...I just know that you prayed with us. You believed with us and God heard those prayers and He honored them...in a HUGE way!

I know that Miss Courtney still has work to do here on earth and we are here to help her complete that.

What now you ask?

She will still graduate in June and come home with me. We will continue the new drug regimen and hopefully in time her immune system will get stronger.

Don't ever let anyone tell you that prayer doesn't move mountains.

Don't ever let anyone tell you that God doesn't hear your prayers.

Don't ever let anyone tell you that life, no matter how difficult things get, isn't worth fighting for.

"Never quit. Never give up. Never lose your faith! It's the one reason you walk this earth. For God chose this time and place just for you. So make the most of it." 
WJ Green, Jr. 

Courtney thought she would share the news herself:

video

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