Well, I am just going to be straight forward…there is no
NIH (National Institute for Health) in Parker’s near future. Although his doctor made every effort to get
him in and even though she talked to the lead doc there, it seems that because of the 17
week long government shutdown, they are now very backlogged. They are only taking
kids that fit criteria for one of their studies. She did ask the doc to ask other docs if
anyone would be interest in a “very unique” kiddo; so he is posting on their JA
doc groups.
Parker was quite upset with this news; we
are, however, please that Parker’s health has had some improvements. His lungs have improved and pulmonology is
happy that capacity is increasing. And
he has not had any other internal organ involvement in quite some time. For this, we are incredibly thankful. He is still in incredible pain; having skin
issues off and on (minor vasculitis, rashes); fevers come and go but are not as
high; and he has some joint swelling, but ankles are not as constantly huge as
they use to be. We do feel that the
Rilonacept has slowed the progression of this disease. And we are pleased with this drug in
combination with prograf and his hizentra weekly infusions; it seems to be a
pretty decent combo for him. Of course, we
wish it was even better, but we are pretty pleased with the progress because it
has kept him out of the hospital and he has had less illness. This is a huge blessing.
After a mini battle with our health insurance, we got
Parker’s foot orthotics approved. His
left ankle has turned down towards the ground quite a bit, despite PT and his
current orthotics. So he is
upgrading. At first, the insurance
denied the new orthotics saying that only diabetes patients qualify…but we are
so thankful that we were advised years ago to ask for a “case manager nurse”
with his insurance. Plus, I am pretty
darn persistent. So after calling her
and pleading, she advocated on his behalf and they were approved. I advise anyone raising a child with chronic
illness to ask if your child can have a case manager nurse. It really helps to have one individual to
talk to at the insurance company who knows Parker’s case.
Parker is now seeing a local pain management doctor (this
is doctor number 13…jeeze louise). He is
totally on the same page as us and wants to work on getting Parker off the
narcotics and use other routes to help with pain. He did two rounds of tests with him and it
looks like he is a candidate for nerve ablation. We are seriously considering this for his
back. For the first time, in about 5
years, Parker had zero pain in the area the tests were done and it held for
about 4.5 hours. He told this doctor
through tears, "thank you for the best Christmas present ever". Of course, the doc and I got all teary with
him. We are also going to discuss his
ankles further because his rheumy is wondering if botox injections in his
ankles would help. Through PT, he has
had much improvement but his range of motion is still quite limited due to the destruction
that has already occurred in his ankles and she feels botox might help.
As for a quick “Logan update”, his JA (spondy) has
progressed some but is still somewhat manageable. We have not had to add biologics. He is on Celebrex and after discussion with
the rheumy, he has decided to try adding plaquinel. First, we need to get him in to the eye doc
to get a baseline on him and also to look at his eyes because he gets some
really bad reddening in them (especially just prior to, and sometimes after,
migraines). We want to get the ophthalmologist’s
blessing before starting this new med. Right
now, this kid walks around with salanapas patches on his joints…it is just not
cutting it. The doc feels that he too
has some mild vascular stuff going on…and we joked that it seems to just be one
of those weird family issues.
So in closing, we are so very proud of our two boys. Logan continues to push through dual
enrollment and loves his college classes.
And Parker is juggling massive amounts of medical appointments…Yesterday,
he went to PT even though he felt miserable (a little concerned he might be sick)…
On the way home from PT, I think Parker summed it up best when he said “I am
who I am, and I am really strong!”
