Apr 06, 2017 at 11:23 am

Out but not free

Update posted by Shalimar Sulisto

Weight: 2.99kg

Arlene was discharged from the hospital this evening and is now on her way home to stay at our house.

Eye test result from April 4th showed no signs of CMV infection present, and the newest liver test taken yesterday revealed a surprisingly positive turn in her GOT/GPT levels. As the doctor said this morning, "it seems to be improving on its own". For Arlene, this means not having to endure one month long hospital stay and daily injections to treat the infection. The tests are completed, and she's safe from long term organ issues.

She is still connected to the feeding tube, and unfortunately will remain so until doctors can see more development in her respiratory muscles / feeding and swallowing mechanism. Without the tube she doesn't get any nutrition, therefore it's necessary. The follow up doctor's appointment will be next Wednesday, April 12.

The objectives now are:

1. Get Arlene up to speed with her weight, by gaining 200grams or more /week.

2. Train respiratory muscles with physiotherapy so she can consume food normally and therefore be free from the feeding tube.

3. Cleft palate surgery.

I'd like to note that she was admitted to the hospital at 2.5kg and today she weighs almost 3kg. Arlene's mom was smiling as we were leaving the hospital. We know the journey is nowhere near the finish line, but it's such a great feeling to see hope in her mother's eyes and a sense of relief to know that her baby is doing better than where she was a week ago.

Thank you to those who have participated in this campaign and we hope for your continuous support.

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