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.

1 comment:

  1. Finally read through your whole blog; you had me in tears!

    I can't help but think of 2 Corinthians 12:7-10.
    "To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."

    Loved reading your story! You have a truly inspiring faith. :)