Baylor Update

The other night, I got an e-mail from the Program Director for the feeding program at Baylor in Dallas.  I had written to her asking for an update on how things were going with working with Ethan's insurance coverage.  Her response:

They are telling me we can not take the *** {Ethan's coverage} at this time. I know we are trying to get something worked out in terms of being able to negotiate but we are a very big system and this will take time. I am going to keep him on our waiting list and when time comes I will see if we made any changes to our current plan. I am checking to see if there are any programs comparable to ours that would accept your funding on the east coast. Will keep you posted if I hear of any! Thanks!

While I  can acknowledge that she has no control over the issue at hand, I cannot help but feel that she allowed HOPE to be dangled in our face only to take it away.  They knew of the pending issues regarding negotiations before we traveled to Dallas.  We should have been made aware of what was happening!  


I have worked so hard, along with the help of our Social Worker at Brenner Children's Hospital and Dr. Fortunato {GI doc} over the past few YEARS to get ok'd to go to an out-of-state program and finally, FINALLY, we get the ok and now the rug has been ripped out from under us.  I don't know the next step.  


Scott says to keep trying.  I know that I will, because I'm Ethan's Momma and that's what I do, but I must admit that I am TIRED.  When does Ethan get the break?  When can something just be easy for him because it's the right thing to do?  I am so close to starting a fundraiser to be able to take Ethan to KKI and just pay cash.  I mean, we all support other efforts to better the lives of children overseas {awesome, btw} and I am just grasping to try and give my son a chance at a higher quality of life.  *sigh*  


We shall see where we go from here...