Tuesday, July 22, 2014
We've been having some serious pool fun lately. The girls have learned to swim quite well and even do some very basic diving off the side of the pool. We've had a friend for over a year now, who is beginning to spend a lot more time with us lately, making things even more exciting and fun. You might recognize him from the fire station tour post a few posts down.
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.
Wednesday, July 16, 2014
Sissy has been home two years now. She's doing very well. She has a strong desire to learn and help out, her reading ability and vocabulary are growing, her social skills are good, she's learned to swim and so much more! Most of all, she's learned to love and be loved. I am so proud of her and the fine young woman she is becoming!
We celebrated her Family Day with Chinese food, of course, donuts with colorful sprinkles and a family DVD night.
Monday, July 7, 2014
We spent the day in our pool. As you can probably tell by the few pictures of the older girls, they are pretty impatient with the camera now - typical teens and pre-teen! This is the only picture I got of all of them and they could barely stand still.
Apple liked this ring a lot. Until she slipped through it trying to lay back and float on her back. I fished her out without her so much as coughing, but she didn't want anything to do with the ring after that. I got some cute video before it happened, at least.