As many of you know, Mara has been having some problems with
her knees.
She woke up on the morning of
May 30th limping with a swollen knee.
I
took her to the pediatrician that morning, and we spent four hours in the
clinic.
We saw an orthopedic pediatrician,
and he aspirated her knee.
They also
took an x-ray and did some blood work.
We were then referred to a pediatric rheumatologist in
Iowa City.
Today met with the pediatric rheumatologist at the
University of Iowa Children's Hospital.
Mara was diagnosed with juvenile idiopathic
arthritis (JIA) based on her symptoms.
She has been complaining of pain in both knees fairly frequently the
last couple of weeks.
She has fluid in
both knees, they are both warm, and she has some restricted movement in both of
them.
She has "cartilage
knobs" on the inside of her knees which is irreversible.
However, we will hopefully get the disorder
under control, and she should "grow into" her large knees within two
years.
So hopefully they'll become less
noticeable.
Untreated, she could have permanent joint damage, muscle
loss, more cartilage growth in the wrong areas, vision problems, and other
things.
We have two options for
treatment:
knee injections or an oral
medication.
The doctor highly
recommended the knee injections, and we feel most comfortable with the
injections also.
We can get the
injections in
Des Moines or
Iowa
City, but we are currently planning on going to
Iowa City.
The goal is for the injections to last 4 months, but the doctor has seen
them last anywhere from 6 weeks to 4 years.
The goal of the injection is to put the JIA into remission.
We should get an injection appointment sometime
this week, and her first injection will hopefully happen within a couple of
weeks.
There are no restrictions or limits for physical
activities.
We just continue on with our
normal routine as best as possible.
I am
going to check with the doctor about the benefits of physical therapy.
We were a little overwhelmed today and forgot
to ask about that.
Best case scenario
would be that she'd outgrow it sometime during childhood but every kid is
different.
I haven't done much research
yet because I told myself I wasn't going to read too much until we got a
diagnosis.
So I will have to keep you
posted!
Mara did well today.
It took a lot for her to be brave to let the doctor, intern and nurse
all poke around.
She got to put on some
special numbing lotion before her blood was drawn which she thought was pretty
fun, and she was proud of the pink tape she got to wear afterwards.
She also did her first urine sample which was
a new experience!
We told Mara we'd get some ice cream to celebrate her bravery, but I was really getting ice cream for myself because I was emotionally drained. I did feel much better afterwards! Ice cream is amazing.
Micah was a bit crazy after sitting in contained areas for a couple of hours. We had to wait 30 minutes for Mara's numbing lotion to set in, so we camped out by the large windows and watching this scene. He was sure entertained by all of the construction going on outside! Actually, we were ALL entertained by this. They are building a new children's hospital, and they have this huge hole dug. We watched as the diggers filled up dump truck after dump truck removing soil. This picture doesn't do it justice because this whole was huge and the driveway out was SO steep!
Thanks so much for all of your prayers.
We really appreciate it.
As some of you know, I have been praying for
a miracle and complete healing.
I know
my plans are not always the same as God's will, so I have also been preparing myself for different news.
I have
been praying that if Mara does have some type of condition that symptoms would
show up before our first appointment, so that we could get an accurate
diagnosis and quick treatment.
We are
doing our best to embrace this new journey.
Thanks in advance for all of your support!
