Finding a New Normal

Ever since the girls have been back in hospital last Thursday, Johanne and I have been looking for a sense of what is ''normal'' or at least a ''new normal''.  This new normal must take into account that the girls may be in hospital for the next little while, which may include
Christmas.  We were trying to do it all.  To put in a military term, we were trying to fight a three front battle all on our own: the home front looking after the children at home, my work, and the hospital.  I would like to say we were doing a good job but we were not.  I was at work and a very smart Padre came to me after a meeting to talk and he made me see that I needed to take some compassionate leave from work and stop trying to be a super hero.  I have to admit I was under a great deal of stress because I realized I was doing a bad job fighting the three front battle.  So I did it,  I requested it and was granted compassionate leave.  This added to my Christmas leave will allow me to focus on my main priority, my family.

With all the bad that comes with being in the Army, we have it really good and we do look after each other.  I am so glad the Padre and some other very close friends came to me to help me work through my issues.   Deep down inside I knew I needed to do this but it is hard to see the problem clearly when you are up to your neck in it.  This being said, this leave was needed and the stress level has come down a lot.  Now Johanne and I can divide our time between the house and the hospital.  This will give us the ability to find our new normal.  Our children through all of this have been outstanding.  But they also were starting to feel the stress, always being asked to rush as soon as they got off the bus so Johanne and I could
rush to the hospital or to work or just get the laundry done.  They never complained but they need to be allowed to have a life without the rush and worry every single day.

Going on a week back in the hospital and the girls are doing better, but still no diagnosis.    Johanne and are learning how to work with the NG feeding tube and the pumps and it is not that bad.  In some ways it will make our life easier as the tube gives a ''no fuss'' way to give medication, and we are guaranteed the girls will ingest enough calories.  The girls do not mind it much, however, Sage Phuoc has pulled hers out a couple of times and I pulled Iris Binh's out once by accident.  The girls still have blood work to see how they are doing and still have a cold which is not going away.  We are having the liver and skin biopsies next
Wednesday.  The medical team is currently debating if the procedure will also include an MRI.  The girls are gaining weight slowly, with days up and days down.  As long as the overall week represents a weight gain of no less than 30g per day, we are doing good.  They have more energy and they love to play on the floor.  They have also become little stars of the floor with lots of the staff stopping by just to play with them.  We love those visits from everyone!  The personel at KGH is fan-tas-tic!

For all of you who are praying for us please keep it going.  We do feel it and it is making a difference to us.  To all of you who have sent gifts, or sent meals, or who have helped us out in any way, we cannot express our thanks to you.  It all has helped in a great way.  I know in my heart that these girls did not wait for us for 18 months and traveled around the world for nothing and we will all live under the same roof once again.  If we have to have our Christmas in the hospital, we will as a family and we will do it up as the Wagner family can, because our team is still strong, supported by all the people who love us.