Dr. C thinks it is more likely that it is a flare (rather than a break through symptom), because it has lined up with his pneumonia. But she does agree that the symptoms are consistent with CAPS. She requested that I continue with the extra dose and keep her updated day to day. 

Emmanuel felt well enough to go to Mass with his siblings - so that’s great! He did have to do a breathing treatment and his appetite is low, but his spirits are up! 

Damian had a tough morning. He refused to do his morning shot and did not go to Mass because he said God doesn’t love him because He doesn’t heal him. 😢 But I recognized already that he wasn’t himself (because he didn’t take his medicine, his pain sends him to a “hulk mode” and he’s no longer rational). He had been fighting with everyone and a little out of his mind. He finally consented to the injection and now has apologized to me and others. He also said he doesn’t really think God hates him, but he just wishes he didn’t have this disease.

 Me too, bud, me too.  

(& yes this often happens … this is my life. It is a truly blessed life. But it is often emotionally challenging - having to help them learn to cope in a healthy way with having a chronic illness (which is not easy even for adults!), convince them to take the injections of their own free will (because I would probably not win the physical fight with any of them now!), and finding joy even in the cross. But we cannot give what we do not have. So, I believe that my own illness and sufferings have been my great blessing - they have allowed me an avenue to learn personally, so I may guide, share, and sympathize with my sons’ chronic illness and help them in love. But some days are flat out exhausting! And I had my own illness to deal with today on top of all of this … so yeah, please pray for us all!!)

On a much happier note, Louis had quite the eventful morning! Louis has been commissioned by Bishop Barron to do portraits of all the bishops of the Diocese of Winona-Rochester!