Summer has completely flown by!  I cannot believe the kids start school in less than three weeks.  This summer Aidan spent time at some camps- golf and Roblox… his favorite things!  Going to Wisconsin with both sides of the family and seeing friends.  We’ll be ending summer spending time in the city.  Actually enjoying the city instead of one of his many doctor’s appointments. 

Thanks to our recent trip to the ER in the middle of the night about a week ago, we got a close look at Aidan’s kidney with an ultrasound, X-ray and labs.  All of which looked great!  Thinking about that, how much he’s grown and the fact that he did not have any long stays at luries this year has been such a relief.  And these victories are truly cherished and celebrated. 

Recently a new diagnosis… new obstacle.. was added to Aidan’s list.  Trachodysplasia Spinolusa.  If you have no idea how to pronounce that out loud, you’re not alone!  We were told it’s a rare skin virus caused by having your immune system artificially suppressed.  We were also told the treatments are not guaranteed to work, let alone make improvement with this skin condition.  Annnnnd we then found out, insurance won’t be covering the potential meds.  Ugh.  Aidan was holding back tears in this appointment.  It was crushing to see his spirit crushed in this appointment.  He’s 9. Kids can be tough critics and he knows that.  It hurts knowing he has another struggle to face.  There is nothing more gut wrenching as a parent than watching your kids hurt or sad or face obstacles you can’t just take from them.  I spent a long time in the dark shadow of this one. But we are ready to refocus and stay hopeful with the medicine we got yesterday.  

Thank you all of those for your support and love.  For following our story.. his journey and all the prayers. It means the world to us.