Friday, July 18, 2014
It's been a long time since I've posted anything about Jie Jie's health. She's a very healthy child, but she does have a serious and rare birth defect. Her condition has been and is treated surgically and medically. Every 6-12 months we go through a series of invasive tests and imaging scans and we've just completed them for this year. The news is mixed. The good news is that we don't need to change much for now, other than in increase her medication, watch and treat side effects and keep up with her daily therapies and treatments. She's had some issues this year managing her care and lying about it and that neglect has caused a bit of what's going on now, though not by any means all of it. The bad news is that the specialist thinks she'll be needing a big bad surgery later on. We don't know how far ahead later on is, and it's not 100% certain she'll need it, but it's highly likely, unless medical technology comes up with some new stuff.
The surgery itself is big and bad enough, but it's the fact that Jie Jie has already had several surgeries and infections in China that increases the risks due to scar tissue inside her, the way she's formed due to her special need and the fact that there just isn't much of her, that increases her risk and chances of success with this surgery.
It's also not the only surgery she'll be needing, so each surgery needs to take into consideration the other because both involve using parts from one part of her to rebuild and/or remodel the other parts.
So, I'm in that grieving phase that leaves me weak and scared and wanting to crawl into a dark hole and cry for my child. I know that I will emerge soon and find my strength again, but I wish more than anything that my poor little girl could catch one break when it comes to her special little body.