Posted (Tina) in All Posts on May-1-2009

Ella had a great day. She was in a really good mood, so we were having a great time together.

We did lots of sitting up and playing. Along with her laptop computer, she loves her giraffe. His name is George. He plays different musical tones that are pleasant (you can actually handle the noise from this toy)! She tolerated sitting up without support and playing with various toys for 30 minutes…and then, I’m the one that picked her up and switched gears. It is so good to see her getting stronger.

The Bun was in such a great mood that even bath time was amazing. I wish the camera had been handy because her smile was so huge. She was kicking and playing with the water. For the first time in months, it seemed like she was figuring out that this is not a torture treatment. Plus, she is getting so much stronger physically. We still use the toddler bathtub (which sits inside the regular bathtub), but I think she has gained better control of her torso over the past several weeks. I was noticing her kicking her legs like crazy to splash the water and yet, balancing herself in place and holding onto the sides of the tub. Since she was enjoying it so much, I stretched it out as long as the water was warm. It lasted about 30 minutes. It was great and so much fun! I can only hope that as the days continue to pass by, she will figure out that bath time is a good thing.

We’ve stayed with the same volume of food these days (1137ccs per 24 hours), but we are slowly making the daytime feeds larger via bolus into her g-tube. As of this morning, we are at 190ccs for each bolus and 187ccs delivered overnight via the food pump. About a month ago, we were up around 335ccs on the overnight feed, so we are making good progress. Our goal is to continue increasing each day feed and make the night time feed number smaller and smaller, so we can just eliminate it!

I finished reading “Holding on to Hope” by Nancy Guthrie. It is an excellent book – I really enjoyed her thorough insight into God’s ways and His character while digging into the truths uncovered during Job’s experience. There are many times that I found myself feeling confirmation in my heart concerning truth…and truth that resonates with an eternal perspective. Well, I enjoyed that book so much that I started reading “One Year Book of Hope” by the same author. I wanted to end by sharing an excerpt from the devotional reading today:

Lamentations 3:13, 19-22 (NLT)
He shot his arrows deep into my heart. The thought of my suffering and hopelessness is bitter beyond words. I will never forget this awful time, as I grieve over my loss. Yet I still dare to hope when I remember this: the unfailing love of the Lord never ends! By his mercies we have been kept from complete destruction.

What could possibly give you the courage and confidence to have hope in the midst of your bitter suffering? Remembering the love of God. Rehearsing his past faithfulness to you. Choosing to think about the sufficiency and eternity of God’s love. It may seem daring to make room in your mind for what you know is true about God, and honestly, it is difficult when it feels as if he has shot arrows deep into your heart. But the truth of God’s love transforms our thoughts and feelings when we choose to remember and believe.

Ella Renae is such a living testament of his past faithfulness to us. We choose to remember and believe.

Kristen on May 1st, 2009 at 8:18 pm #

He floors me with His faithfulness.. . praying you through.

Rainey Family on May 1st, 2009 at 8:22 pm #

I’m happy to hear Ella had such a good and happy day! You guys deserve it!! When Michael was finished with the toddler bath tub, but not ready to be on his own in the big bathtub, we used this bath seat:

You might want to check it out if you don’t already have it 🙂

Christe Mitchell on May 1st, 2009 at 8:25 pm #

Oh, sweet baby girl.

Katie on May 1st, 2009 at 9:39 pm #

Oh, I love the pictures of Ella sleeping…what a fighter she is!

Julie Kirk on May 2nd, 2009 at 8:25 am #


Chambers Family on May 2nd, 2009 at 8:47 am #

So happy that she had a great bath! Love that – baths should be fun — all those bean baths are paying off!

Joel Snyder on May 2nd, 2009 at 1:12 pm #

Ella, You are becomming such a big girl. I am amazed at your progress with the bath time and your PT. It is wonderful to see you and Mom have such a great time togeather. I love to read the posts when you are in great moods and having so much fun. I will catch you later. Have a great weekend. Love,Grandpa!!!!!!

LoriAnn Kuhn on May 2nd, 2009 at 5:46 pm #

Great facial expressions from that girl; guess you never wonder how she’s feeling. LOL Thanks for sharing so much of your lives with us avid followers of your family (and of Christ).
LuLu and the Atomic Monsters

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