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!
It's time to spread a little JOY! And because of Camp Boggy Creek (one of Paul Newman's Serious Fun Camp, http://www.boggycreek.org/), we said YES to JOY this past weekend. It was our final Family Retreat Weekend because Parker is 16 and will be aging out. There is not enough good I can say about the miracle of camp Of course Parker went out with a bang. Thanks to these Dads for making his final performance extra special (see video link below). Enjoy the first and final appearance of the Camp Boggy Creek Boys: The Godfather (Michael, Dad), The Enforcer (Brian), The Facilitator (Tony), The Mayor (Parker) and The Heart Throb (Pal Jamar). I laughed so hard my sides hurt. That's one special kind of "YES to JOY". Thank you Camp Boggy staff and volunteers for bringing 20 years of joy to our children. Watch the video and experience the joy for yourself. Link to video Also, here are a few pictures of our fun weekend.
Since November, I have felt like I have been functioning
with heartache and moving in slow motion while the world around me whirls on in it's constant motion.I finally feel strong enough to share this piece of my heart.(If you get sick to your stomach easy, don't read on...but this is what Parker endured and now lives with...it is real and painful.)
Parker has been in such a fight during these past 3
months. He had his “surgery re-do” on
his left foot. We had no idea how much
more extensive this surgery was going to be in comparison to his previous
bi-lateral surgery that was done in March.
The surgeon had to restructure and realign his foot, ankle and
tibia. This meant bone turning, ligament
and tendon tightening and lengthening, pinning bones once again, and inserting
THREE titanium screws to fuse his foot into place. The medical terminology for his surgery: Subtalar fusion (joint between talus bone and calcaneus bone is removed and joint surfaces are fixed together to decrease pain and improved function) with calcaneal osteotomy (cutting the heel bone and shifting it to correct deformity). He endured a splinted cast (which adhered to
his skin due to the blood and took 30 minutes just to remove), then a regular cast, then a boot cast with bone
stimulators, and now he has a brace.
Just this last week, he has finally begun taking steps
again. He is so happy to be on his feet
again. Of course, his first few days of being able to stand, he
way over did it. He even danced
some. A tearful moment. Then he went into a JA flare. Another tearful moment.
These past three months we have seen him in more pain than
I thought possible. Week three through week
eight were the absolute worst. He is
quite glad that now physical therapy (PT) can begin. He was going to start PT this week, but
yesterday we had to take him to the doc and they had us take him to the ER, where we spent the entire day/evening. There was concern that he had pericardial effusion again. He was having pain with breathing. Such intense pain that it woke him that
night. His D-dimer blood labs were
elevated which we found out could mean a blood clot. After many labs, an EKG, x-rays, an
echo-cardiogram, and a lung CT… he was cleared to go home to sleep in his own
cozy beds. Thank goodness all the tests were
ok.
A few days prior to Parker’s surgery, a film crew came to video
his pre-op appointment and our family to honor Parker at the Arthritis
Foundation’s Night of Champions. Logan
went to the event in New Orleans to speak on behalf of his brother. The event was the day after Parker’s surgery.
Below you will see the video that the AF made to honor Parker. Parker is
forever our champion.