Liza’s Medical Journey

Liza is our medically complex princess. She is now 9.5 years old. She has had many brain surgeries, spinal surgery, suffered a brain bleed and has many other medical issues. Her last brain surgery was less then a year ago.

She is more then her diagnoses though, I want you to know that. She is strong willed, funny, kind and so smart.

Liza was diagnosed with CRPS (complex regional pain syndrome). She’s no longer able to use her left leg to walk, the pain is just too much. Depending on the day/time her right leg is in so much pain she can no longer use it. Her left leg is so swollen that she can no longer wear shoes. She attends therapy 2 times a week currently and swimming 4 times a week. Doing this may help slow down the progress of spreading.

There is a program that has had amazing results with children like Liza. And so will be going to Boston Children’s Hospital and starting a program that will help her walk again and hopefully stop her pain from spreading. This program is roughly 6 weeks long (could be longer) and requires her to be there 8am to 4pm daily and once home an hour of added therapy. The program recommends she stay close to the hospital, as she will need to rest as much as possible once the day is over.

We haven’t asked for help in a long time, but this fall things just haven’t slowed down. I had to step back from a job I love to be home with Liza and Jacob as they go through medical issues at the same time. Jacob had spinal surgery 11/1/19 in Boston.