3.29.17 Rehab

Last week Aimee and I met with a new Rehabilitation Medicine doctor. Primarily these appointments are about equipment and body movement. We had originally been sent over to rehab, because we were concerned about changes in Aimee's tone. She was considered a "floppy baby" and had always had really low tone. However, her arms and lower legs seemed to be developing higher tone. In previous appointments, the rehab doctor had agreed that this was happening and tracked the changes. This new doctor disagreed. She said that Aimee still has low tone and she did not see any indication of high tone developing. Instead she has contractors in those areas. This means that due to her lack of use (not extending her arms, turning her hands, standing), her muscles and tendons are becoming shorter. This has become more and more evident, particularly with her left elbow, though both are limited now. She is not at a point where this is causing major problems. She does not try to reach for items, she has not had major skin breakdown there, and we are able to get clothes on and bath her with only a bit of challenge. However, when it does become a probelm, it would require a lengthening surgery, similar to what she had done on her left calf 15 months ago. In the hopes of avoiding additional surgery with subsequent bracing, we are going to attempt to have elbow splints made for Aimee to wear at night. The hope is to maintain the current range of motion and avoid the surgery altogether. 

The only other significant news items from this appointment were a recommendation to see a physical therapist outside of school and to potentially have a custom seat back made for her wheelchair to help with her side support issues. This will wait until we meet again with the pulmonary/orthopedic surgeon combo and hear an updated spine surgery timeline. 

At home, our current focus is on sleep. Aimee has been staying up in the evenings and waking up for several hours during the night to grind her teeth, cry, or just play. We have attempted to increase melatonin again and it is working for the moment, which is evidenced by the fact that she is energetic during the day and desatting throughout the night again. It is a hard game to play. Either she doesn't get good sleep and thus doesn't desat much or she does get deep sleep and sets monitors off. Considering other options going forward since it seems that increases in melatonin are only effective for a few weeks. 

And! I saved the sweet bit for last. This morning, Aimee looked at my face for a full 20 seconds! I could probably count on one hand how many times this has happened. She does look at Ed's face pretty often though, courtesy of his beard framed face. :) Hope springs eternal.