Saturday, Sunday and today ...HARD. We received a letter on Saturday from our insurance company, BCBS stating that Clara's need no longer warranted private duty nursing coverage, and our claim has been denied. Starting last Friday (the day before we actually received the letter) our hours were cut down by four, and starting next week until July 17th we will only receive 8 hours a day. In July there will be another assessment to determine if she qualifies for nursing at all. 

Needless to say our hearts dropped with the letter and there once again another battle to face. 

I can't even begin to express how much Clara's nurses are instrumental in her little life and how much we love them.  As working parents with another child with a health problem, Jason and I can not sustain caring for her in the same skilled way. I just know without help Clara will suffer and not thrive. It just takes a team to care for such a special baby. 

Clara's medical condition is more complicated than it was over a year ago. There have been multiple complications that have risen in the past year, more diagnosis, more doctors and more medications, a surgery added to her list, sezuires we fought hard to get rid of, and now a feeding tube to manage and take care of. We are left just speechless with the news, and to be honest I am just so tired to fighting. So looking foward to a summer to ease into. 

We have began the appeal process with letters and other documentation from her physicians. This process could take awhile, so we must prepare how to provide Clara help in the meantime. Thank goodness for such a great support team, such as our CAP worker, etc to ask for advice and help. 

I have spun myself around and around with calling, emailing, faxing, worrying about this. And at the end of day, I know the only real way fight and get through it, is to give it away. Pray and to say Lord I am coming. I have done all I can do, now I give it you.