Grace has been steadily improving. 

She is not throwing up as much, she's had a few messy diapers that look more normal than she's had in months, or even ever.

She had an ultrasound which she slept right through. 


Her drain has not been putting out much, so they wanted to check the fluid level. This is the first time I've watched her ultrasound, so I can't compare. And it's really hard to tell what's what, but I did recognize the kidneys.

I started to write that I hadn't heard any results yet, but the radiology doctor just came in and said there is still evidence of VOD, but the fluid level is down.

Yesterday, she was interested in eating, notably when she had to be fasting for the ultrasound. When she was allowed to eat, she had some fruit snacks and trail mix, but it came back up. The nurse thought it was mostly because of mucus that she had to get out, but I'm not so sure.

She had fun playing with the safe in our room, with her babydoll accomplice.

Today we woke up early to error 12 from the feed pump. It makes it continuous high-pitched beep until someone comes to turn it off.

She threw up very soon after waking up, and I think we need to do a wake up button push every morning. (She didn't need it at all in the night, so she is improving.)

But she's been happily playing since. She says and signs "later" when I ask if she wants to eat. She tolerated playing in the room while I folded laundry and got dressed, but we went for a walk as soon as possible and have been in the playroom for quite a while now.

Posted by Heather Daley on March 9, 2024, 10:28 am | Read 48 times
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Awww. So glad to hear this. Sending lots of hearts!! <3

Posted by Heidi Johnson on March 9, 2024, 3:40 pm

I wonder if her oral food shouldn't be of the really easily digestible kind, such as we start off with after a bout of stomach flu.

Posted by Linda Wightman on March 9, 2024, 7:07 pm

Glad to hear of the positive progress! Love to all!

Posted by dstb on March 10, 2024, 8:44 am
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