Nothing much has changed with Ana. She continues to have leg pain and ups and downs with her weight. The good news is that we are on a gaining trend right now. Ana's oral feeds are minimal. She is packing most of her food and/or spitting it out. As for Shey and I... we are loosing hope. I guess Ana's problems aren't meant to be known. Maybe God is teaching us a lesson about trust, control, and patience. My biggest fear is that Ana could get worse. I don't feel as though I have done enough to help her get better. It is my responsibility to get her the proper medical care and I can't even do that. The whole ordeal is overwhelming. As for now we plan on giving her a break from hospitals, doctors, and therapy. We will attempt to get a home nurse who can come to our home to do her weight checks. And we will try to get therapy in the home also, but as for medical institutions... we are taking a break.... at least until we raise enough funds to get her proper care at Johns Hopkins. Cutting out all of these appointments should allow us to save enough in gas to purchase her much needed feeding pump bags. Ana is allowed one bag per day by insurance but the formula company states she should have a new bag every 4 hours. If we bought a $250.00 case of 30, that would allow her a clean bag every 12 hours.
Our only need right now is prayer. Ana needs alot of prayer... her only chance to get better is through the grace of God.
Emmy
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