We've been waiting so long for you to show up...

Only for you to put us off another three months. That's right, answers. I'm talking to you. We are not friends, not even a little bit. I don't know why you keep promising to come, but then canceling at the last minute. Annoying is an understatement. You make us sad for our Bean, angry for the past 22 months. I'm done addressing you; I hate that you continue to evade us.

We got a phone call from home health today and they said Bean's antibody work up results were in and that they were abnormal. They also said they were concerned about her left leg pain because the area of her left tibia directly below the knee was hot to the touch. Bean currently has and is being treated for osteomyelitis in her right tibia bone. She is on, and has been on, IV antibiotics for around four months. We have one more month of antibiotics before her treatment is complete. The relief of being on the downhill slide was cut short by concern when she started complaining of LEFT leg pain this weekend. She complains of pain in the tibia area and pain in her toes. So much pain in her toes that we refuse our really adorable Dah-Dah (see: Hot Dog; see: Minnie Mouse) shoes. Anyway, home health called her pulmonologist and we started the business of waiting for a call back.

A little background. Anyone who follows Bean's page (http://www.facebook.com/prayforjaleigh) knows her history and the struggles we've had with getting a clear diagnosis. She is continually fighting off major infections and everyone we encounter is at a loss as to why. We've finally reached that point where it was time to start looking for immune deficiencies. So we took the first step this week when home health came and did an initial antibody work up.

Her hemoglobins are still low, sitting1.4 points from where we were a week or two ago.. Bean has Anemia of Chronic Disease, so we will continue to watch her numbers. Her white blood counts are finally on the low end of normal. They've been very low and we've been watching them closely. We had to switch her infused antibiotic and we're watching her numbers slowly rise back to her normal, which hangs on the low end. Her antibodies were more complicated. Basically she was well below the lowest possible normal, but the test allowed for a discrepancy up or down and if you applied the discrepancy up, it put her on the very, very lowest point of normal. Because the allowed discrepancy put her at the lowest normal point, he wants to retest her in three months. Apparently the work up that follows this test is very extensive and he doesn't want to put her through it if we don't have to. We obviously don't want to traumatize her any more than necessary, but we're disappointed. We felt like we were so close to answers...

That being said, we absolutely adore her doctor. We couldn't ask for a doctor who cares about his patients more. We are frustrated by the process; he's just the messenger if you will. We will continue the journey we started with him because we know he's doing what's best for our daughter. The thought of starting over with another doctor in another state or town terrifies us for our family, for our daughter. So, while we appreciate suggestions to go elsewhere (truly, truly...we do), we will continue on, at least for now, right where we are.

Jaleigh has chronic pneumonitis and right middle lobe syndrome as her official diagnoses with her lungs. They are broad diagnoses, but they're specific enough for us to be conscientious of her symptoms. We know, God willing, that as time goes on, we will finally get our answers. She will be two in October. Her first time being hospitalized with unexplained sickness was at three months old. I know there are so many who have struggled longer and for that, I commend you. As someone who has done it nearly two years, I can't possibly imagine doing it as long as you have. Many props and prayers to each and every one of you.