Gettysburg is six year old
Deacon Murtoff's favorite place to visit.
The family camped there a few weeks ago.
He is fascinated with everything down there, so we went and enjoyed it.
We had some trick or treating at the campground we were staying at.
And then lastly, we did the battlefield.
No matter how many times we're there, we have to get to the round tops.
We have to go around, Devil's Den and everything.
Memories made.
Memories Stephanie and her husband cherish.
Given the information that we had received when he was a baby.
I never expected us to have
the fun and family outings that we can now.
Stephanie vividly remembers when Deacon arrived six weeks early.
Deacon was born September 6th, 2015, by an emergency C-section
due to a placenta abruption.
He sustained a lot of loss of oxygen and blood,
and his kidneys actually went into complete kidney failure.
After his birth, Deacon was transferred to Penn State Children's Hospital.
He had very significant acute kidney injury
and what people think of as kidney failure
and for several weeks
after he was born had very poor kidney function.
And I would describe it as just barely avoiding
dialysis, which is replacement for kidney function at that time.
Knowing that his kidneys were functioning at 10% or less.
We knew OK, transplant
possibility, dialysis is a possibility.
How are we going to do this with a newborn being on dialysis?
Doctors came up with a plan to treat Deacon's kidneys
so they would function on their own.
He was low in sodium without having it supplemented,
so we gave him a sodium chloride solution
to be able to maintain
his sodium status until his kidneys were able to do that.
And so it was basically salt water
that was used as his form of Miracle-Gro.
And by the
time she was a month old, his kidney function
went from being the 10% or less range to 20%.
Well, Deacon's kidney function improved.
There was another concern.
December of 2017.
So he was two years old.
We discussed growth hormones.
We saw his kidney function improving to the point
it got up to 67% total kidney function.
However, he was not growing.
The kidneys are involved in the metabolism of growth hormone.
And sometimes when kidney function is poor, children grow very poorly
because they don't correctly process is probably the way
to think of that growth hormone
and the things that come after growth hormone in terms of helping with growth.
So he required growth hormone injections on a daily basis.
And in January 2018 and started getting a nightly shot
of human growth hormone, which
giving a child a shot. It's
a job to begin
with, yet alone giving it nightly.
And he received human growth hormone
for up until October of 2019.
During that time, Deacon grew three and a half inches.
Deacon went from being in the negative percentile
in height to to this very day.
I think he is now in the 25th percentile in height, so he's still short.
But he grew.
Deacon is a lovely, well grown child.
Now it worked
well for him and now he's, as I mentioned, his kidneys has have improved.
Stephanie calls Deacon her magic flower.
He continues to grow and thrive.
He absolutely loves school,
camping with our family.
He he loves motorcycles and race cars.
He rides his own electric Harley Davidson bike now.
Knowing that he has come that far to do things
that he absolutely loves is just a mom's dream come true.