Thursday, April 18, 2013

Progress and Questions

Simon is doing far better emotionally. He still has a hard time with sharing and being told no, but the tantrums don't last nearly as long. Hallejulah!

We, his parents, are adjusting back to our normal time zone. Our tummies are adjusting back to U.S. food. Craig has had time to read a few pages. I've had time to...well, maybe eventually I'll have time to do something!

Signs of Simon's progress:
1. Little orange backpack that he never, ever let go of in China sits in the corner of his bedroom EMPTY! He is finally feeling like a permanent resident of our home.

2. The bathroom door is occasionally CLOSED when Simon is in there.

3. Simon ate some chicken!

4. He can be in the same room as the dog without screaming like death is waiting to catch him by surprise.

Medical update:
The group of specialists working with Simon are questioning his diagnosis. At first this sounded good, but the new names of blood disorders they are throwing at me are actually worse. I thought we were at the bottom of the barrel with Thalassemia b major but apparently not. Right now they are thinking he has something called Diamond-Blackfan Anemia (DBA) which has a high predisposition for cancer and the lifespan is about 40 years old.
I've been throwing myself into the research and talking with the doctors and asking lots of questions. I see where they are coming from based on his blood work but I'm probably still in denial and pushing for other tests to rule out a few other anemia's first.

We have yet to see the cardiologist to find out the extent of the damage done to his heart and if he does have DBA then it is very likely that he will have heart defects as well.

Keep us in your prayers as we try to fit in all of these doctors visits and research and phone calls and still find time to bond with our new son and find time for family time. If you are a friend please keep calling. I can't often get to the phone between appointments/tantrums/sleeping but I appreciate your thoughts and your invitations to things even if I can't accept them yet. You are all amazing and your support humbles me daily.

Friday, April 5, 2013

Real life

The real life part of adoption is hard, hard work and we are in the thick of it. Simon is home and adjusting. Adjusting would be the key word in that sentence. He can throw a heck of a tantrum. Getting comfort from another person is a completely foreign concept to him so holding him and trying to calm him down does very little good. But we just stay the course. Someday it will click. At some point he will realize that our arms are loving and kind and he will discover that they are comforting. So, we hold him and rock him and sing to him for hours on end.

Yesterday he threw a tantrum to end all tantrums at naptime. He was screaming in my face and punching his bed and throwing the blankets and the pillow. Then he would calm down to where I could safely hold him and I would rock him and sing to him and lay him down and it would start all over again. Around and around we went. I prayed for grace and understanding. I sat with him in the middle of his bed while he was angrier than I could have imagined for one so small and I talked to him. I told him that I get it. I do. He's furious. I would be too. He's been ripped from everything he knows and stuck with this crazy American woman who can't even cook a Chinese noodle properly!! He's gone from never answering to anyone to being surrounded by safety and controls. Everything he has ever known has just changed. It's for the better, but he doesn't know that yet.

It reminds me so much of my relationship with my Heavenly Father. How many times has He set me on a course that was for my own benefit and all I could see were my own fears? How many times have I railed at Him and tried to run away and all the while He was singing His love over me? I try to cling to these memories while I love on my Simon. And I pray for grace, lots and lots of grace.