Update

So, I know I promised pictures, but I'm on the Ipad, and I can't get them from here! But rest assured I'm definitely taking more.

Things have been good, actually great. Hudson is a rock star, he is doing so well. His motility issues have resurfaced (did they ever really go away?) and it's something we need to address. He is having episodes of stomach pain that, while not new, are increasing in frequency. Perhaps need a consult with a new doctor, don't know yet. But otherwise he looks good. He still fatigues very easily, but oxygen helps a lot with that. STILL waiting on a cardiology decision!! This is getting a bit ridiculous!

There is something very exciting happening. There is a treatment of sorts for mito that is being trialed out of Stanford. They have recently opened this trial up to a broader group of patients, and Hudson is being considered for it! The trial coordinator emailed me for more info, and said that enrollment is beginning mid to late August. I can't begin to explain how hopeful and excited this makes me feel. For many of us in the mito community, a treatment for mito in our child's life was unreachable. I don't ultimately know what will come of this drug, but the fact is that it's progress, and that is SO good!

Please keep Eithene and her family in your prayers. Eithene has fought a long hard battle with mito and is now on hospice care. We love you sweet Eithene!