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!

Aida on November 10th, 2008 at 7:42 am #

Ella you are so cute!

Kelli Billman on November 10th, 2008 at 7:55 am #

That is too fun. The boys and I loved it, worth waiting for!

Williamsburg on November 10th, 2008 at 8:28 am #

I’ve been pondering what parts I can grasp of the jewels of Phil 2:1-11, where Paul encourages us to take whatever rich pieces we can of being blessed and comforted by our relationship w/ Christ and using those to fuel our unity w/each other, remembering how He suffered on our behalf in order to serve us. Your literal daily, hourly service to Ella Renae, without having even a clue what the outcome will eventually be, is fueled by His service to you, and there’s no better flow that I know of to be in. May it continue to bring you the comfort, joy, encouragement, fellowship and perseverance you need to be His this week. All our love. XOXOXO

Nancy Costas on November 10th, 2008 at 8:52 am #

There is no better sound than the laughter of a child. I am glad to see you are all doing well. Hope Miss Ella starts to feel 100% soon. Love to you all, Lyle, Nancy & Amaya Costas

Vicki/CO on November 10th, 2008 at 9:01 am #

Oh, Ella, it was so wonderful this morning to see you smiling and hear you laughing! You are so very precious, honey! God bless you and Mommy and Daddy and Kelly! You are so loved…even by those of us who have never met you in person! What a blessing it is to be in your “cyberspace” family and get to watch you grow and change!

Jim and Char Jordan on November 10th, 2008 at 10:11 am #

It is the simple things in life that delight the soul. I was so grateful to hear her voice.

Julie on November 10th, 2008 at 8:51 pm #

Baby giggles are the best! There isn’t another sound like it in the world.

Joel Snyder on November 11th, 2008 at 9:24 am #

Ella, I talked to your Dad this morning and he said you are doing O.K. He wanted me to watch your video and Wow!!!!! you are a regular giggle box. I am so happy that things at least a little bit are better for you. I am praying for more steady progress. I will catch you later. Love,Grandpa!!!!!!!!!!!!!!

Loren L on November 13th, 2008 at 6:08 am #

OH what a doll! she is precious

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