glimmer of hope

Mondays are always the day that I weigh Maliyah. It’s kind of a love hate moment because I often don’t know what to expect. If she gained weight, I am then happy and relieved. If she hasn’t gained and or lost, I often question “Why” and go about running through all the possibilities of why she didn’t gain. I try not to let it affect my over all mood but I still can’t help holding my breath while I wait for her to stop fidgeting as the number appears.

Today her weight was 20lbs 2oz! I remember a few months ago in March when we were initially hospitalized due to her bloating and failure to thrive she weighed in at a mere 14lbs 5oz. I look back at her photos and cringe at how thin and frail she had become. At that point, 20lbs seemed like an impossibility. But yet, here she is 20lbs!

I let our dietitian who manages Maliyah’s TPN know what her weight was and she text back that they were going to lower here calories by 30 in this next batch of TPN. This means that she will be getting only 20 percent of her daily caloric needs from TPN. This is great news for the weaning process and also her liver.

I sometimes find that it’s easy to get discouraged after setbacks like our hospitalizations in May and in June but it’s days like today that are the small victories we learn to celebrate. This is the glimmer of hope that we hold on to that hopefully one day she will be completely weaned off of TPN.

I love her cute little toes!

The other thing that happened today was that we received Maliyah’s late birthday present from her Halmony and Harabogi! She received some books, a new swimsuit, a potty seat that she can climb up and sit on the toilet all by herself, and the thing she was was most excited about was the t-ball set! She had so much fun just trying to hit the ball. I’m sure Adam will be out there teaching her the proper way of hitting a ball!