Saturday, August 4, 2012
Update and trying to understand
Maia had a good night. She had Tylenol a couple of times, but that was all she needed for pain. I got here at about 8:45 and Maia was alert, smiling. My beautiful daughter amazes me with her ability to smile in spite of everything she goes through. Yes Sabrina, she is a true warrior princess! X-rays of the head and belly early this morning and CT scan of the head at about 10am. Waiting for results. Dr. D was headed for surgery after stopping by briefly before I arrived so hopefully, we will see him later. Oh, just to clarify... This is not the same Dr. D who was wonderful when Maia was in rehab. I feel a bit bad for our new Dr. D as he has essentially been dropped into this situation. The first thing he said last night was that he had no explanation for how this has happened twice. You may remember that Maia had to have her shunt revised in late June because it was not in the ventricle. We were ASSURED following the revision that ultrasound guided technology had been used and the shunt was properly place. But, because no follow up images were obtained, the assumption was wrong. Dr. D thinks it may have been near enough to the ventricles to initially pull some cerebrospinal fluid, but only briefly. Thus, the reason that he ordered today's imaging. Truly, we struggle to understand this whole situation. Mistakes have been made since Maia's first MRI was obtained in January or February (can't remember which) of 2011. And our sweet girl thrived and blossomed IN SPITE OF the obstacles that we didn't even realize existed. Following her first shunt revision in February of this year, she soldiered on making progress even when we kept telling the doctors that something was wrong. But, because she "looked great," our concerns were dismissed. And because of that, Maia has lost so much. A child who jumped on the trampoline, who memorized Bible verses, who set the table everyday, who was full of joy and light is no longer able to walk, feed herself, communicate even the most basic need. And I will be honest, Mark and I are angry. Maia has lost so much, but so has Matthew. So have Mark and I. So have our family and friends. It hurts to see her struggle. And yet in spite of the losses, she remains full of smiles, cheerful, happy (well, at least most of the time). I want to write more about where faith is in the midst of this, but Maia just woke up from her nap so I will quit for now. Thank you for your ongoing prayers!