How we are doing

Several of you have asked how I, Jianwei, Alex are coping with this and the arrangement for Alex.  I will update a little bit over this subject.

I, as you have felt through my writing, have been pretty calm.  I might not seem strong to you before, as I don't have strong personalities or aggressiveness.  I think in front of unexpected situations like this, my calmness and rationality helps.  I was very surprised at first but I acted quickly.  The first thing I did that night when the pediatrician asked us to go to ER soon, was to take off my contact lenses.  Then I packed my essentials quickly as I know Lucas would not let me leave hospital for an extended period of time and it would be hard to ask Jianwei to get certain things for me as he is not into girls things. :) I also packed Lucas's favorite blanket and Mickey.  I am the main person to communicate with doctors and nurses and I stay calm during our communication, making mental notes as we speak.   I have my cries a couple of times a day, especially when I see the out-pour of love and care from so many of our friends.  I use iphone to keep track of things that need to be done.  I know I need to plan many things in our life and I'm getting a good handle on that.   The first person outside of our family who heard about the news is Sijin, as I called him early Friday morning.  I asked him to help prepare documents to extend Jianwei's mother's visa and get a Chinese visa for Alex in case we decide to send Alex back to China with the grandma.

Jianwei's mom was going to go back to China 12/18, as she entered US on 6/19.  We just filed her visa extension, part of the supporting document is a letter from Nationwide Children's hospital, saying how important it is to have a family support for the treatment.  Having our fingers crossed that her visa extension will be approved.  We are thinking of letting Jianwei getting citizenship so his mom can stay with us for a prolonged time period.  Jianwei's mom is calm and resilient like me.  :)  And Lucas is very much attached to her.  Lucas kept asking for Nainai, wanting to go home and see Nainai.  Right now, Grandma is home with Alex, even though she very much wants to come and visit.  No children under age 14 is allowed as visitors to Nationwide Children's -- we probably wouldn't let Alex to come and visit if it's allowed.

Jianwei broke to tears as soon as he heard about it.  It reminded him of losing his father during college, which was surely a traumatic experience.  He has been crying more -- but I think letting emotions out is good.  I never try to hold back my tears either.  Jianwei is doing a good job paying attention to details such as physician names and drug names and doses.

Jianwei and I are eating and sleeping well.  Lucas can't finish most of the stuff we ordered from the dining service so I think as long as we are in the hospital, we have enough to eat.  Yanli sent some delicious food yesterday, which we are consuming at a slow pace.  My dear friend and coworker V sent some power juice made from organic raw vegetables and fruits Friday evening, together with some fruits and snacks (Lucas loves that box of crackers and that "cookie" really helped us to entice him with   oral medication).

We did a few things logistically.  We changed our medical plan for next year to a one with high premium and lower out-of-pocket cost.  We maxed out health FSA contribution.  We filed visa extension for grandma and applied for Chinese visa for Alex.  Monday I will call my company HR to ask to change dependent care FSA to 0 and max out health FSA to max.  Could somebody find out for me that is it the case that, for health FSA, each parent can contribute as much as 2500?

Lastly about Alex, he cried the night we left for ER, as Jianwei was crying and Alex had never seen daddy crying.  Alex was crying really hard, asking "Baba Mama promise me that you will bring Lucas back" and "I want to go with you".  I haven't had a chance to talk to him since but Jianwei goes home once a day.  Our friends Sijin and neighbor/friends/newly-established-family Doris, who Alex was very familiar with, are taking Alex with them during their weekend activities so Alex doesn't get bored.  Actually I do worry about grandma when Alex is not at home.   I hope she will stay strong and healthy, as she has been and will be such a tremendous help for us.  I feel very sorry for her that after a long time of continuous hard work, she has to endure this together with us and continue to help out.

About Alex's arrangement.  We are still debating whether we should send Alex back to China.  We are certain that we do not want Alex to go to daycare any more as we do not want to deal with germs at daycare.  We are afraid that Alex would get bored staying home most of the time with us and thinking he might benefit more if he goes back to China and attend preschool there.   That's the rational thinking of mine.  Emotionally I want Alex to stay with us.   Alex might not be intellectually advanced, but he is emotionally mature for his age.  And I will try my best not to ignore his needs -- and what he need most is love.

I tend to be impatient and snap on people, especially the ones closest to me, such as Jianwei.  :)  I will try to do less of that.

I might break the news to my parents today as they usually like to do video chat with the kids Sunday mornings.  I hope they can handle it well.  They don't seem to have the calm gene as I have.  Wonder where I got that gene from.  :P