Amidst the difficult issues described in our last post, there has been another, quite intimidating turn of events that has come about within the last couple of weeks. It was business as usual here in the Pfeifer home, Faith had spent the majority of her day sitting in the living room playing with toys, and Ashley picked her up to put her to bed. Nothing out of the ordinary. Faith went to sleep for about 45 minutes and after her nap Ashley brought her out into the living room to play again. As Ashley set Faith down on the floor, Faith flung herself backward...*odd*. Ashley set her back upright and Faith flung herself back again. This time Ashley had put pillows behind her to break her fall. While it was unusual, Ashley chalked it up to Faith's strong will and let her lay on her back to play until I got home. When I got home I went to set her up straight again and it was the same. So, for the rest of the evening, we let her lie on the floor to play.
The next day things became really concerning. It appeared that Faith had lost her ability to sit. Instead of flinging herself back she began to slouch to the left to prevent herself from hitting so hard. I would try to sit her up and she would fight it. I would wrestle her into sitting position and she would slump to the left and not even give it the effort. After a few trys we gave her a break. We sat her in the seam of the couch, where she could be upright and comfortable. As the day went on we recognized that Faith's right arm had lost a lot of mobility as well. She didn't seem to want to lift her arm at all. She would avoid using it unless she really wanted to and even then she would use her fingers to pull the rest of her arm along instead of using her shoulders to do the job.
At first we thought it was a balance thing. We thought, "Maybe she is just disoriented and she can't sit up". Balance being associated with your ears, we called our "on call ENT" (Ashley's Brother) After a short house visit he said her ears look just fine and we dismissed the theory.
We then called our "on call Therapist" (Ashley's Mom). After some brain storming with Pheobe it had come to mind that Faiths Neurosurgeon had mentioned, that the syringomyelia in her spine could get worse. He advised that if Faith ever lost any mobility in her extremities to give him a call. I was sure this had to be the issue. We called his office and he agreed this could be the problem and suggested we schedule an MRI to take a look.
The next day things became really concerning. It appeared that Faith had lost her ability to sit. Instead of flinging herself back she began to slouch to the left to prevent herself from hitting so hard. I would try to sit her up and she would fight it. I would wrestle her into sitting position and she would slump to the left and not even give it the effort. After a few trys we gave her a break. We sat her in the seam of the couch, where she could be upright and comfortable. As the day went on we recognized that Faith's right arm had lost a lot of mobility as well. She didn't seem to want to lift her arm at all. She would avoid using it unless she really wanted to and even then she would use her fingers to pull the rest of her arm along instead of using her shoulders to do the job.
At first we thought it was a balance thing. We thought, "Maybe she is just disoriented and she can't sit up". Balance being associated with your ears, we called our "on call ENT" (Ashley's Brother) After a short house visit he said her ears look just fine and we dismissed the theory.
We then called our "on call Therapist" (Ashley's Mom). After some brain storming with Pheobe it had come to mind that Faiths Neurosurgeon had mentioned, that the syringomyelia in her spine could get worse. He advised that if Faith ever lost any mobility in her extremities to give him a call. I was sure this had to be the issue. We called his office and he agreed this could be the problem and suggested we schedule an MRI to take a look.
My assuredness of the situation brought to memory the original conversation with our neurosurgeon about the issue. The surgery to correct the syringmyelia is invasive, high risk for potentially little reward. I remember he did not want to do the surgery unless things were getting progressively worse. It left us both not quite sure what we were hoping for from the MRI results.
After much difficulty in getting the MRI done, we finally managed to secure a spot on Friday night of last week. Faith passed out twice prior to the MRI. We tried to convince the anesthesiologist that this was nothing out of the ordinary, but he insisted that we stay the night to be sure that she was okay. It was a long weekend waiting for the results.
The Nurse Practitioner for the Neurosurgeon called us Monday. Upon review of the images, the Neurosurgeon felt the pocket of fluid on Faith's spine looked the same size as the last time it was scanned, if not a little bit smaller. Its not a problem with the fluid on her spine. Praise God!!
While this still leaves us with the big question of "what the heck is going on with Faith?" we realize that we are always asking this question... and while we hope we can figure out why she can't sit up anymore, we will continue to walk through this problem like every other one we have faced. Hand in hand with God and one day at a time.
