Posted (Tina) in All Posts on March-16-2009

Ella woke up about 5 times last night. Unfortunately, I was up from 3am – 8am, so I spent a lot of today catching up on zzzs.

This stinkin’ cold is still hanging on to Ella. She spent the day wanting to just be held, whining lots and just acting like she doesn’t feel good. I hope she doesn’t have anything else going on. It seems like it is just overall fatigue and her snotty nose that is bringing her down. So, her and Kelly had a mellow day. We even canceled her occupational therapy session, as we knew that Ella would not tolerate working on her least favorite activity (eating). We’re hoping that she feels better soon.

As of this morning, she weighed 9.55 kilos, which was her weight last Friday. We’re not sure if we are hitting another plateau in weight gain. We will watch the next couple of days closely and may increase her fluid again.

The great news is that we have not had to give Bumex and she has tolerated a large increase in fluid (200 ccs higher than right before her SVC procedure). Her numbers look great on reduced oxygen when she is sleeping at night. It tells us that her SVC being open is definitely the break we needed for her body to not be quite as fluid sensitive. Over time, we’re hoping this means that we can eliminate diuretics. We’ll just have to wait and see.

We have another week before our various doctor appointments: pulmonologist, pediatrician, hearing test, etc. In the meantime, we are going to try and get her better this week and take it easy.

Colossians 2:6-7 (NLT)
And now, just as you accepted Christ Jesus as your Lord, you must continue to follow him. 7 Let your roots grow down into him, and let your lives be built on him. Then your faith will grow strong in the truth you were taught, and you will overflow with thankfulness.

Williamsburg on March 16th, 2009 at 7:03 pm #

You precious kid, you. So sorry you’re still snotty, sweetheart, but I don’t know if there is anything that could affect that camera face. Years of practice paying off =) Hugs and prayers for feeling better and sleep all around. XOXOXO

Williamsburg on March 16th, 2009 at 7:05 pm #

OMG – just noticed it – Day 600?!?!?!? Wowza. Thank You, Jesus, for 600 days of Ella Renae West.

Jim and Char Jordan on March 16th, 2009 at 7:51 pm #

She is looking better even with a cold
She really looks big? Hard to believe. Love you

kristin thompson on March 16th, 2009 at 11:16 pm #

You Love BUG! Snotty nose or not…YOU look awesome! Ella you look like you belong in a toddler bed and want to run races around the puppies and kitties! Test your parents…can they keep up? 🙂

love you and love your parents!


Kathy in West Texas on March 17th, 2009 at 4:13 am #

I love that first picture up there, where she’s laying crossways! She is getting so big!!! She’s looking good, even w/ that cold! Ya’ll are in my prayers!

Joel Snyder on March 17th, 2009 at 5:03 am #

Ella, You are looking good even with your cold. I am hoping that you can get rid of it so that next week will go smoother for you. I will see you sometime this weekend. Enjoy the good warm weather. Catch you later. Love,Grandpa!!!!!!!!!!!!!

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