Sunday, February 12, 2017

End of 2016 Medical Happenings

A quick impromptu photo shoot in the lobby at Shriner's Hospital in early November 2016.

From September to December of 2016 it seemed like one huge medical appointment. We traveled several times to various medical centers, all at least a 3 hour drive away as well as having many local appointments, as usual.

Jie Jie and Sissy had extremely thorough evaluations done through Kaiser and both now have a definite diagnosis of intellectual disability which is part of the overall diagnosis of permanent developmental delay. I'm still working/fighting hard to get them the programs and services they need. Due to their earlier diagnosis of borderline intellectual functioning, it's hard to get certain agencies to accept the change in diagnoses.

Jie Jie's spinal fusion surgery had been scheduled for Nov. 10, 2016, but she didn't pass the pre-op physical. We had to do several more tests, many of which were quite invasive, and we are still awaiting a new surgery date. Meanwhile, her spine continues to get significantly worse. Fortunately, she isn't in any pain and is actually enjoying gymnastics at our local adaptive sports complex. I'm enjoying not have my child go through major, risky surgery and having to deal with all my other kids out-of-town while it's all happening.

Jie Jie's speech therapy was discontinued. She didn't show improvement after 2 years, according to the evaluation done at Kaiser, which was a pass/fail test and not one designed to show improvement. I'll be appealing their decision since she's made significant progress and passed all her speech goals.

It's becoming apparent that Apple is still developmentally delayed. While still progressing and learning and doing some things that are age-appropriate, there are some areas of concern that are being watched closely. She still has unexplained weakness in many parts of her body. For example, it's extremely difficult for her to lift her head up off the floor if she's lying on her back.

1 comment:

Julie said...

So good to see you back!