Posted (Tina) in All Posts on December-13-2008

We had so much fun with Ella is her exer-saucer today. Somehow, she was at just the right angle in the seat. It wasn’t too uncomfortable and she spent a good amount of time in it.

This was in-between decorating the house with some Christmas cheer. It sure is fun to have Christmas music and decorations around the house.

Clinically, Ella did well today. And tonight as she is sleeping, her numbers look good. She is saturating well on 750ccs of oxygen and her heart rate is 115. That is a good place for Ella. When these numbers start to get worse while she is asleep, we know that she might be getting too wet. For now, it appears that the Bumex did the trick. We think that she just might need doses of Bumex every 2-3 weeks to keep her in a good place. Not the most ideal, but better than taking it every day!

We’ve increased Ella’s food to 34ccs per hour, for a total of 812 ccs of food total per day. She seems to be tolerating it well; this is good since we need her to gain weight. We are also having success with bolus feeds. We are bolus feeding every 2-3 hours while she is awake and using the food pump at night when she is asleep. So far, so good. Our plan is to stick with this for this upcoming week. If she continues to do well, we will have to take a look at increasing the density of the food.

Tomorrow, Josh is going to try and tackle the basement. It needs help – it is so messy since we moved. I will take care of the Bun and watch the snow fall. Already tonight as I type this post, the snow storm has hit. It is coming down heavy outside. It sure looks like Christmas here in Colorado!

Sleep tight Miss Ella…don’t let the bed bugs bite.

Joel Snyder on December 14th, 2008 at 1:03 am #

Ella, I am so glad to see you and Mom and Dad having a great time. I know your Mom is pleased to get some christmas decorating done. Josh good luck with the basement and I hope you guys stay warm. I am at the museum and the temperature is 15 degrees and it is snowing steady. I will check on you tomorrow. Love,Grandpa!!!!!!!

Laura Marold on December 14th, 2008 at 10:17 am #

Hi there!

Just checking up on you all and wishing you a Merry Christmas. I’m so glad things are going well for the beautiful little bun. Love, Laura M.

Eve Johnson on December 14th, 2008 at 12:10 pm #

I can’t believe how strong she’s getting! It wasn’t too long ago that you still needed to support her head. The joy in Ella’s face in the first picture is beautiful, and so is the sight of smiles and laughter reflected in the mirror!

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