Sunday, November 18, 2012

One Week and Counting

Thank you all for your thoughts and prayers and please keep them coming because all that positive energy is helping our little girls getting better.   The girls are starting to show major signs of improvement.  We are out of isolation which is great because now I can leave the room to find food and more importantly, coffee.  The girls are eating and drinking
well and are responding to treatment.  It may be just me but they are looking a little less yellow today.    Iris Binh has gained 7 oz in 5 days, and Sage Phuoc has gained 10 oz.  I am trying to build a routine with the girls with the drinking, eating, and sleeping.   Again, sad to say, but the girls do well in an institutional environment, as this is what they are used to.  So one week completed in hospital and we are starting week two.  We will have a few more tests this week, more blood work, more ultra sounds, and more visits from specialists to take a look at our little wonders.  We also may start a new diet routine with special milk to
help them gain weight faster.  The doctors have not come up yet with what is wrong with the girls.    We have two leading theories: malnourishment with vitamin D deficiency causing issues with the liver, or Alagille Syndrome.  Both are treatable with medications and the girls are able to live a long happy life.  The test this week will confirm which one it is but
it could take months to get a final diagnosis.  They have started treatment already with massive doses of vit D and will continue next week.  As far as liver biopsy goes and bone marrow, it will most likely wait for now as we need the girls to gain weight.   I am
encouraged with the girls' progress to date and I am very sure they are going to have a very long and happy life.  Keep the prayers and positive thoughts coming this way so the girls and I can return home.  Thank you for everyone who has come by to see me, it makes the days go by a little faster.

Johanne is keeping the fort with the other 7 wonders at home, and she comes to see the girls and I every day.  She is trying to keep a sense of normalcy for everyone.  Santa parade was in the plans last night and the Holiday tree went up today.

We are looking forward to a normal life, all 11 of us, under the same roof, knowing that everyone will be fine.



  1. Love you guys and am following along on this wonderful journey of yours. Your positivity is infectious. Love and hugs- Stacey

  2. What a blessing that you are providing them with the medical attention they so badly need. I am sure it is stressful and hard to have your family separated. Know that you are doing all that you can and your daughters and family are in my prayers.

  3. Yay for progress! My family is sending you positive thoughts all the way from the west coast, and we're so happy that your girls seem to be on the path of healing and will hopefully be home soon.

    Lisa, David and Adeline

  4. Je pense à vous.
    cousine Hélène