We've been very busy with Doctor appointments since we got back. Monday we saw the Muscular Dystrophy Doctor. He was just as confused about Manny's condition as everyone else. He sent 1 1/2 hours with me asking lots of questions, pouring over my records. The good news is that he knows specialists at Boston and DC children's hospitals who know a lot about these "out of the ordinary" diagnoses. So we're thrilled that someone else is "on the case".
Tuesday Jacob had more tests done. We're awaiting the results. We're most interested because he is showing more symptoms. Tonight I wrote his Pediatric Nephrologist to see what the next steps are. Still needing many prayers. ... (Update: As I was finishing up writing this blog entry, his Doctor called back. She looked through all his lab values and he is holding his own, not sure why he would be feeling worse. We're going to adjust medications and go from there. Yippee! Huge relief.) Today, Manny saw the Urologist. He has some "issues" due to his condition. So today we found out he is going to be needing some surgeries and they will be combined. We're waiting for a clearance from the Neurologist. It will probably be scheduled for late December. There are risks but less than NOT doing the surgeries. This will be about a 2-3 week recovery.
But even still, I'm his Mama and I can't bear to see him suffer. And yet, I'm about to do just that to him. So it's with a heavy heart that I make this decision.
My children have truly taught me what life means. What life is about. What truly matters.
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