Another day, another procedure on the horizon. I am starting to feel like Al Pacino in the Godfather saga. Just as we seem to be moving forward towards leaving the hospital something else pops up. After the modified barium swallow test, results seem to indicate that Rafi has some esophageal strictures. This furthers the diagnostic notion of the pneumonia being caused by aspiration. Therefore, Rafi will be required to go back into the operating room and have an esophageal dilatation. While this isn’t the worst thing in the world, and many, if not most, EB kids will eventually have one done, and complications are rare, we feel terrible for our little girl. She has been through so much the past two and a half months that we just want the procedures to be over. We want her to be able to run around and enjoy her time as a child.

Other than that, Rafi is doing very well. She has not required an oxygen mask since yesterday morning. She’s been happy, smiling and laughing more than ever. She has even been interacting with some of the nurses she has gotten to know and feel comfortable around. Overall, there is a lot to be happy about.

As we know more I’ll report it.

Until tomorrow….