Parents, big brother (with enthesitis-related JA), and warrior sharing our perspectives of Juvenile Rheumatoid Arthritis, a painful autoimmune illness affecting joints & internal organs. JA affects 300,000 children in the US. Many also have other autoimmune illnesses. There are multiple forms of JA; some less severe than others. Parker has systemic onset JA with overlap syndrome, hypogammaglobulinemia, severe allergies and asthma. We proudly pound at JA together, HOPING for a cure!
I believe that Parker’s life has great purpose.He has such amazing strength and every
opportunity he has, he shares his love and smile with others.As a mother, this makes me so very
proud.But more than anything in this
world, I want to take away his physical and emotional pain.I want to somehow take away his worry and his
fears…the fears that wake him through his tears at night, when his subconscious
takes over.Over these last two days we
have been processing a ton.
The photo on the wall looked like this.
Last Thursday, we went back to the hospital to see the ophthalmologist
to see how his eyes are doing under the pressure of his pseudo tumor. Unfortunately, they look bad. The doctor took a picture off of his wall of “inside
the eye” and started to explain what was going on with Parker’s eyes. Parker says, “Hey, since I was two, I thought
that picture on the wall was a picture of an orange (because it kind-of looked like
one). I just thought you really loved
oranges.” Of course we all busted out
laughing. It reminded me that children
can see things we don’t…
Then, Parker shifted gears and started asking a ton of
questions and I could see his mind processing every single word with fright all
wrapped up in his incredible strength. I
just let him ask…as I held my breath, not believing what I was hearing and
witnessing…that this couldn't actually be happening with my baby. But it was really happening. Neither of us shedding a tear…we just
The doctor explained that because we had to go with a
less effective drug (Topamax instead of Diamax), that it may not be very good at treating the pseudo tumor that is causing the papilledema in his eyes. There is a ton of pressure on the back of his
eyes. This is why his vision keeps blacking out. He said that the back is not concave as it
should be…Parker responds with “so it’s convex then?” The doc said, “Yes, and the optic nerves and
vessels are also all swollen.” Parker
then asked, “Could I lose my sight?” The
doc replied, “yes, but we will do everything we can and that is why you are here;
so I can keep an eye on them.”
He then explained that we are just trying to buy time
with the Topamax in hopes that it will somehow lessen the pressure. But …he felt there was a high likelihood that
a shunt would need to be put into his brain to drain the cerebral spinal fluid
to either the heart or stomach to lessen the pressure. Parker asked if that would work; would that
save his vision? The doc said it could,
but if it didn’t work, there was still one more option of doing surgery on his
eye to put in a sheath to act as a protector of the optic nerves. I know these types of procedures happen with
other children but this is MY child… who has both autoimmune issues and
immunology issues and any time any surgery or trauma occurs with the body, it
is very scary because the body tries to attack.
But of course we will do whatever we must.
As we left, Parker went into his ultimate charmer mode
and chatted away with the nurses about how awesome he looks with his purple hair
and wishing them all a “happy nurses’ week”.
We proceeded downstairs to records because we ordered all his records
from last week’s hospital stay…and again, as we passed the many nurses and
staff he celebrated them and thanked them for being nurses. He gave so many high-5s and cheered on many
people; and I am certain he was coping at the same time.
After we got the records, we went to see my mom and
grandma to deliver our mother’s day love.
His great gram asked how he was doing, and he busted into tears. Then, he took a few deep breaths and said, “Give
me a minute, and I will explain.” Then,
he proceeded to tell them both all about his doctor visit and smiled and said,
I’ll get through this. It will be
Laying relieves head pressure.
When I got home, I read the entire stack of medical notes
from the hospital stay last week. It confirmed
all that we already knew…but it also had two pieces of info that concern
me. Parker has a lesion on his right
frontal lobe…we knew this…but we didn’t know that the radiologist recommended
repeating the MRI with triple contrast.
And there is a pars intermedia cyst on his pituitary gland. They did an extra MRI of his pituitary because
he is supposed to get growth hormone. Endocrine
told us that if anything is on the pituitary, then he couldn’t have the growth
hormone because the growth hormone causes everything to “grow”. This additional bad news is very hard to
process as the growth hormone was going to hopefully help multiple issues. I did call the doc about all this but of
course we have to “wait the weekend”.
So now, we juggle our schedules so someone is home with
Parker because his eyes feel a bit like a ticking time bomb. He is having more head pressure and
nausea. If he begins puking, we rush to
the ER. We have to trust that things
will get better. We have to have faith
that we are moving with tiny steps in the right direction. We ask that all our friends and family
continue to pray and surround us with their loving support.
Yesterday, I was at a “leadership conference” for work
and one of the speakers, James Robbins, said something that really hit home for
me, “Understand the power of 1,000 tiny steps.”
It reminded me that with every tiny step that we make with regards to
Parker’s health, it is an accumulation of steps in the right direction. But I also couldn't help but think…I also
understand that power of the many who rally around our family and help carry us
through this journey. That is powerful
Wearing our blue for arthritis awareness month - May.