Posted (Tina) in All Posts on March-6-2009

Ella did not sleep well last night; she was probably up about 10 times.

This led to her being less tolerant of her OT and PT sessions today. Whether she was just tired or wasn’t feeling as good physically, it showed in her mood.

Her weight this morning was down to 9.14 kilos. That is a significant weight loss from even the day before at 9.3 kilos. We’re not sure if that was just a fluke or not. Kelly weighted her a few times to make sure that the scale was working properly, but that weight kept coming up on the digital screen. This prompted me to try harder to reach the doctor today…we needed a plan to help Ella gain weight.

Thankfully, we were able to reach him and come up with a strategy. He wants to increase her food volume by 10%, in this case is 92ccs. So, we are going to increase each bolus feed during the day to 125ccs and her overnight drip to 387ccs, so we can achieve this increase (total of 1012ccs). We hope it will have minimal impact on Ella’s system, but provide the extra calories that she needs to gain weight. Tonight, we tried one of the increased bolus feedings and it went fine. Also, we gave her the increased amount in her food bag for the overnight feed via the food pump. She’s only been asleep for about an hour, but so far, no problems related to the increase in food.

We’re glad it is the weekend…time to simply relax and hang out as a family.

Kellie Myers on March 7th, 2009 at 4:00 am #

Yes, weekends are a welcome sight with no planned doctor’s visits, therapy sessions, etc. I’m glad the increased feeds are being tolerated so far.

julie kirk on March 7th, 2009 at 8:16 am #

she is looking like a pretty big girl…..

Joel Snyder on March 8th, 2009 at 9:54 am #

Ella, Sorry to hear that you aren’t sleeping well. I will be praying that whatever the problem is that it will soon be solved. I went to work at the museum and didn’t get home till late. I hope things will start to get better for you. Love,Grandpa!!!!!!!

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