SHE IS BACK......

Many people who have observed Kourtney grow up have described as a fun, happy, spunky child that did not let her disease get in the way of life. Over the last year this has changed dramatically. Kourtney's eyes always looked sad, she did not engage in conversation and I longed for her to crack me up with a funny comment or saying. Making Kourtney laugh took effort. We didn't know if it was the pain, depression, anemia or just . . . her age.

Kourtney has received only 2 Epo shots and already, the difference in our child is measurable. Tonight was our weekly Costco meal and the kid was full of one liners. Generally she would sit in a wheelchair and be angry at the world, but over the last week, the lights have come back on (she is now getting more oxygen to her brain). Maybe we should all get some EPO. Shaelyn and Kourtney spend most of their time giggling together where before Kourtney had no use for her sister. She just feels better and not everything feels like finger nails on a chalkboard to her.

The good news is that Pharmacare has been mobilized to pay for Kourtney's EPo shots, but we have to wait to hear if we can get a compassionate supply of EPO from a drug company first, and we have to use that up. But at least there has been contact made.

Tonight our family was in a state of euphoria as we finally have achieved not our new normal, but our old normal. We feel like we have our kid back and we are so thankful. The journey has been so long and we know that the road will always wind but when we see Kourtney free of pain and happy it makes us able to breath again.