Aimee has met with numerous doctors since I last detailed an appointment, but there are two clinics with significant findings.
As I have mentioned before, Aimee has been having significant desaturation episodes during sleep which her bipap machine has not been relieving. The doctors have attempted different pressure settings and an updated mask. Next we are going to try a new piece of equipment that is more sensitive. Thankfully this has just been approved through insurance. As soon as we get that adjusted, we will take her in for another sleep study. Her Pulmonologist team are all concerned as these episodes were not happening during prior studies. We may need to consider another sedated MRI of Aimee's brain to determine if there are signs of degeneration.
Another continued challenge has been with bowel movements and the GI clinic. After many attempts at typical laxatives, enimas, and stimulants, we are finding that Aimee's brain is just not signaling her body that it needs to be emptied. Her muscle tone being low also makes it very difficult to maximize any urges that she may have anyways. We are currently implenting a new regimen that will take about an hour each evening. It includes catheters, homemade gravity enimas, and time on the toilet. It is that last bit that is the tricky business. Due to added volume with the enima and the more ideal position of the toilet, we have to find a way to have her sit on the toilet for 30-40 minutes each day. Honestly, this is just crazy, but, Ed and I are going to attempt making a contraption to help hold her. :/
I am pleased to report that Aimee has been incredibly healthy otherwise, aside from numerous UTIs. Her immune system is greatly improved this season thus far. Such a blessing!
Plus, she has been getting lots of snuggle time lately! Sure love these dears.
