Alex was a 36wkr born with a condition called OEIS Complex. O=omphalocele, E=exstrophy of bladder, I=imperforate anus, S=spinal. Tomorrow Alex, Rusty (my husband), and I are flying to Johns Hopkins in Baltimore, Maryland where the Chief of urology, Chief of Ortho, and Chief of Peds Surgery have agreed, pro bono, to do a consultation for possible repair. Our goal is that they will say yes they can/will do the repairs. We then will have to petition the State of California to pay for the surgery. This has been a long time coming, it's hard to believe it's actually going to happen. Urologist and Ortho at Loma Linda are totally in support of our decision, are willing to write letters to the State of California on our behalf and, have agreed to do all follow-up care. Rusty and I will be handling all financial expenses for transportation, lodging and any tests that the doctors at Johns Hopkins may want. It's almost certain we will have to pay for xrays of the pelvis while at Johns Hopkins as the orthopedist there is requesting films and there were none taken at Loma Linda, even though I had requested we be followed by ortho due to research I had done ref. OEIS.
Judy had mentioned there was a possibility that we could get help for some of the financial costs invovled through donations. Although Rusty and I will do whatever it takes to make sure Alex gets the absolute best care, any help to off-set some of the costs would be greatly appreciated.
Wish us luck!
Rusty, Donna, & Alex
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