Posted (Tina) in All Posts on November-9-2008

Yep, it happened. Some of you might have been looking for this post…and it wasn’t there last night or very early this morning. For the first time ever, the photo and video were ready for all to share. And I simply went to bed and forgot!

In any case, Ella had an uneventful weekend which is good for her. She doesn’t seem 100%. It’s so hard to determine now if Ella is too wet or too dry. We just know that she is not in her prime zone. She has had lots of secretions which has prompted more retching. And you can get her to smile, but at the same time, you can tell she doesn’t feel her best.

We need to get labs done by tomorrow, so we can see where she is at from a wet/dry standpoint. I’m not sure it will really answer any questions or tell us what to do different. She did seem like she was too wet, so we increased the diuretic. Then, it almost seemed like she got too dry so we backed down on it again. Likely, it probably means that we have not come up with the correct cocktail for her diuretic. Poor Ella, it seems to be an up and down roller coaster for her too! And when she is on either side, she doesn’t feel great. We’ll take being too dry over too wet, but right in the middle would be great!

We tried increasing her food rate 1cc/hour on Saturday. I mean, 1 cc per hour should not have much impact. Yet, I’m not sure if Ella knew we changed the rate on the food pump. She seemed like she was not comfortable and retching a lot more. Again, maybe that was bad timing with other things going on. We will likely try again soon.

On a positive note, she was in a good mood last night. It’s nice to know that a simple game of “boo” can still make her happy. Now, it is cute because she is starting to laugh!

We’re excited to start another week to see what God has planned in our lives. Sometimes it’s so easy to look at the waves in life and get distracted by them…instead of looking at the person who created the waves and drawing close. That is our desire as we start a new week: to praise Him for all He has blessed us with and to know that He orchestrates every challenge in our lives for a specific purpose.

Enjoy watching Ella with her laughs…it’s sure to brighten any day!