Craniofacial Appointment - Monday the 28th

Boy, that last post was lengthy. Let's see if I can make this more concise.
I have had so much to post, yet I have had little time to ascertain what I wanted to say. Monday, Jiliang had her craniofacial appointment with the Skull Plastic Surgeon and the Neurologist. I was hoping that they would confirm what the intern at the hospital told Scott: that they could fix the skull, skin and hair. However, I didn't get the news that I so anticipated. Instead, they said that it was a large area, and didn't think that they would be able to replace her hair or skin. That was hard to hear. They also did not know if they could repair the skull bone. It is a risky opening, but attempting to fix it now is not an option. Her cardiologist told us that her heart could not handle a surgery any time soon. Therefore, the craniofacial folks will be coordinating with the cardiologists when the time comes. They hoped that it would close a little more in time, and that surgery would either not be needed or less bone will need to be grafted.
All in all, if a bone graft needs to be done, it needs to be from her own bone - possibly her hip. She is only 26 pounds now at nearly age 4. Where can they take it from? They are not sure. I am praying for a miracle that it closes on its own.
Secondly, because the affected area of skin is scar tissue, it may not close if surgery is done. Scar tissue doesn't heal well, as the surgical incision could refuse to close and die, leaving her skull and brain vulnerable.
Thus, they asked us to leave it alone for now, and let her get good and healthy and hope it closes more or fully closes. We will repeat a CT scan in two years. Meanwhile, we have to worry about protecting her head.
Honestly, I was so completely heartbroken that I couldn't fix my daughter. I felt like I hit a dead end. But then, I decided for once that I couldn't control everything, and as much of a leap of faith as it seemed, I just put it in God's hands. Seriously, I was sitting in the cafeteria with my son and daughter, who were happy, laughing and smiling, and I thought, "Life is just too short to worry about things that we cannot control." I gave it up, and decided to enjoy the day.
Then, I was able to reflect on what the neurosurgeon said to me about Jiliang, and yes, indeed I felt blessed. She expressed how good that Jiliang looked playing with her brother and in general. She stated that she seemed very smart and observant, and the translator nodded an unwavering yes. Then, she asked me to fill her in about Jiliang's heart issue. I told her that she was fortunate to be alive, and that she had a Truncus Arteriosis II repair. I asked if she was familiar, and she knew ALL about it, of course. Maybe she was just confirming the diagnosis with me, because she said that many Truncus patients who go untreated suffer brain loss and some other things. She said that it was amazing that Jiliang's CT scan of the brain looked great, and she showed no brain loss. Looking at Jiliang, she thought that she looked great cognitively, developmentally, and had great balance, coordination and motor skills. She also couldn't believe how she played. We waited in the office for a long time, so she was showing her "rowdy" side.
I sat in a courtyard while my children played in an outdoor children's play cottage. I thought of the miracle of her living through her heart defect. She was one of the 20% that made it past her 1st birthday with an unrepaired Truncus Defect. She lived in an orphanage in a third world country, adapted to a new mom and moved to the States. Then, she underwent a risky surgery only to wake up and think that she was back in an institution (the hospital with Chinese translators and Chinese nurses). Finally, she thrived in her new home. It was nothing short of a miracle. I pray now that she will be safe with her skull defect and that it will close or allow for a safe repair in the future. Honestly, I would love for her to have hair if possible, but if not, the most important thing is that she is alive and well. She is already beautiful to us, and if it is meant to be, it will happen. If not, I believe that everything happens for a greater good. She is certainly here for a reason, maybe even to help other children with traumas/scars or congenital heart defects. I do know that I cannot dwell on it right now. I am choosing to be thankful that she is here in our family.
As for the diagnosis, they honestly could not tell me whether she suffered a burn to the head or if it was a skull defect, called Cutis Aplasia. We ruled out DiGeorge Syndrome, which was good. However, they thought she was just born that way, which would have appeared like a burn. They are leaning towards Cutis Aplasia, because if she would have been burned (which is possible), she probably would not have survived an untreated large burn, being just a few days old with a severe heart condition. Therefore, they believe that she was born that way, which Scott and I both tend to favor. It gave me much peace to think that our little girl did not suffer a burn to add to her list of traumas.
She is truly a little Miracle and she amazed yet a new set of doctors with her will to live and her vitality once again. If you would please continue to keep our little one in your prayers for healing, we would certainly appreciate it. I suppose that God could have another Miracle up his sleeve for us in the future - I just don't know what will happen or how this will all pan out, but I am just thankful for today and every day forward. We couldn't be more happy with this perfect little child, who fits so well into our family. We are focusing on enjoying Jiliang and T.J., and letting the man upstairs worry about the rest.
Thanks for all of your support.