Michael and I have been processing a lot…should we blog….shouldn’t we blog… We know that people who care about us want to know what is going on with Parker, but we have been processing some hard information lately. After a family talk, we decided it was time we share…but please know this is hard. We have been working through a lot and we have been careful with our words because we don’t ever want to over burden or worry our oldest son, Logan, especially since he has been fighting his own battle with vicious migraines. I am happy to report that these migraines are getting more controllable and along with his medicine and infusions he is now quite good at biofeedback. His therapist is amazing and we are very impressed with this technique. Last Saturday he got a migraine, took his meds, and did biofeedback and worked through the migraine and it went away. This is pretty major and we are so proud of him.
During our visit, Parker did the same pulmonary test again…again obstruction…then they gave Parker a breathing treatment…the doc’s theory was if the test results got better after using the meds then we know it’s just his asthma…if not, then it’s more… He repeated the regular PFT and once again…obstruction. This led him to further tests…a more complex PFT. The spirometer reading was not good… it showed not only obstruction but also restriction and this means he likely has mixed lung disease.
So you might be thinking, what in the world does this mean…because I certainly didn’t understand it. I am still trying to understand it. Apparently there is no part of the body that is immune to the attack of systemic JA! When they say it can affect any organ…well, now we really know this. I mean…yes, it has already attacked so much…but this one organ really hit me hard…The crazy thing is, we have been celebrating because Parker’s blood work has improved so much. He also had decreased swelling (although we noticed things are starting to swell again…and hurt more…and he is having a few low-grade fevers with rashes), but he has better blood work. This disease is simply the cruelest thing I have ever witnessed. It teases with your emotions…gives you a false sense of security. Our understanding is that with mixed lung disease, Parker is having both asthma and interstitial lung disease. The pulmonologist said that he is like 1% of kids dealing with pulmonary disease. This explains why his chest has been hurting and burning. It also explains why he has been sleeping a lot more again.
So, yes, our son’s body is attacking itself! And we are obviously all concerned about this. The docs are working together…they are checking his meds, trying to figure out to what extent damage has taken place; we have more tests in the near future; and we are all arming up in our battle gear to fight alongside this JA warrior and win with PURPLE Parker Power. Parker is strong-willed and we are so very glad that he is because he is fighting for his life and we love him dearly.