Tuesday, October 2, 2012

6th Surgery in 17 months

Ok. So. Edward has his G-tube surgery on Friday. Thursday we have to make a trip up to Seattle for a spine appointment and his endocrine appointment. Last Thursday we had three appointments; pulmonary, upper GI scope, and pre-op. His upper GI seems to be well. Pulmonary/Lungs said that he needs a sleep study ASAP. That is scheduled for Nov. 7. We all don't think he is getting enough oxygen at night. And she recommended we go see an E.N.T for his nasal anatomy. (One side of his airway is pretty closed.)
not the best picture 17 months
BUT here is a video of Edward rolling over. I do love him very much. Even though the weight of the constant problems overwhelm me, I wouldn't trade it for the world. Even though I have to remind myself that, yes! Jesus does love me, I wouldn't trade him for the world. Even though the thought of the pain from the past 22 months (from the moment they told us he had Trisomy 18 and wouldn't make it, to his G-tube surgery) could send me to instant tears, I wouldn't trade him for 1000 "healthy" babies. He is God's LOVE given to me in a not so 'normal' package. I wouldn't trade God's tangible love for anything.

my love