Rhema had a few hours to recover from her Urodynamic study and grab some brunch. She was in much better humor by the time we returned to Children’s for her next appointments. Rhema played so sweetly as folks streamed in and out of her clinic room and we waited to see her Physiatrist. This was our second big meeting where we would determine what the next step would be to work on Rhema’s mobility goals. We were advised to video Rhema prior to clinic day so the physician can see how Rhema can use her legs; in a clinic situation Rhema will not “preform” for anyone. So, the Doc watched the videos and read the letter from Rhema’s PT. After much discussion, it was advised that Rhema move to a more substantial brace–KAFO– rather than the AFO shes been wearing. We determined that she did not need a brace that goes all up to her hips, but rather goes up above the knee. We are trying not to view this as a step back, but rather a temporary adjustment that will give her what she needs for this season.
Also we did get some discussion about a bowel program. We have a lot of reading to do and more research before we can begin anything formally. Beginning anything is going to be a huge step for us and for Rhema so we want to begin slow having short burst of “potty time” and see how she tolerates it. She’s sat on the potty a few times and has not been too much a fan. So, we will set a date to begin small and then work out way up to a big intervention in the next few months.