Ella did not sleep again last night. The last night of solid sleep was back at the end of January when I went away to Dallas. I wish we could figure out why she is not sleeping solid. It is exhausting to not sleep well at night.

Besides Mom, Ella had a pretty good day. She enjoyed her PT session and tolerated her feeding sessions with Kelly quite well. She never seems to enjoy eating and we have to play videos to distract her, but at least she was not having a complete meltdown.

We started to notice this past week that Ella was not gaining weight. That is always a challenge to balance her weight gain with any potential fluid issues. So 2 nights ago, I tried increasing her food to 28 k/cal to see if she could handle a more calorie dense formula. The good news is that she seems to have tolerated it. This is important since we always get concerned about giving more volume. Hopefully, the extra calories in the formula will help her continue to gain weight.

As of this morning, she was up to 9.24 kilos. This is about the same as last Friday although she did dip down to as low as 9.06 kilos a few days ago.

Also, we will be watching closely because on Monday, it has been 2 weeks since she had her last dose of Bumex. We’ll be watching her for sudden weight gain, oxygenation status and heart rate to determine if she needs further diuresis. Since the nephrocalcinosis has not improved, we’d like to stay away from Bumex as much as possible.

Looking forward to a 3 day weekend, since it is Valentines Day tomorrow plus Daddy has President’s Day off!