Posted (Tina) in All Posts on May-11-2009

Ella and I had a great day just hanging out at the house. It was gorgeous outside, so we took the opportunity to walk out on the patio and enjoy some sun. I’m so thankful that the warm weather has arrived. It pleases the Southern California girl inside me.

We did not have any therapy appointments, so we did our feeding exercises and physical exercises on our own…in a mom and daughter playful way. It was a good time.

Ella’s daytime congestion is still getting the best of her and causing lots of retching throughout the day. Although, it finally seems like the congestion at night has faded. She is requiring about 800ccs of oxygen during the day and 500ccs at night. We have not seen this type of saturation in weeks, as it seems to have taken about a month for her to return to this baseline behavior. Once again, we are very curious to see what type of oxygen she requires when we travel to sea level later this week.

We have graduated to 210ccs per bolus feed during the day, in an effort to lessen the need for the food pump at night. And it seems that she is still gaining weight, ever so gradually. This morning, she weighed in at 11.02 kilos or 24.24 pounds. We’d like to keep the volume of food the same until she has her next EKG and echocardiogram to check her superior vena cava stent, as long as she is still gaining weight. Since she may still have fluid issues (although it seems to be much less than before) we still need to be cautious about increasing fluids. We would like to make sure the flow in the SVC is the same or moderately the same before increasing her volume of food. Her next appointment is June 9th, so we’re hoping she can still make moderate weight gain until that appointment arrives.

Today, I feel prompted to share an excerpt from a devotional book that I have been reading called “Streams in the Desert” by L.B. Cowman. The entry for today, May 11th, resonated with me this morning. It reads:

Psalm 66:12
We went through fire and water, but you brought us to a place of abundance.

It may seem paradoxical, but the only person who is at rest has achieved it through conflict. This peace, born of conflict, is not like the ominous lull before the storm but like the serenity and quietness following the storm, with its fresh, purified air.

The person who may appear to be blessed, having been untouched by sorrow, is typically not the one who is strong and at peace. His qualities have never been tested, and he does not know how he would handle even a mild setback. The safest sailor is certainly not the one who has never weathered a storm. He may be right for fair-weather sailing, but when a storm arises, wouldn’t you want an experienced sailor at the critical post? Wouldn’t you want one at the helm who has fought through a gale and who knows the strength of the ship’s hull and rigging, and how the anchor may be used to grasp the rocks of the ocean floor?

Oh, how everything gives way when affliction first comes upon us! The clinging stems of our hopes are quickly snapped, and our heart lies overwhelmed and prostrate, like a vine the windstorm has torn from its trellis. But once the initial shock is over and we are able to look up and say, “It is the Lord” (John 21:7), faith begins to lift our shattered hopes once more and securely binds them to the feet of God. And the final result is confidence, safety and peace.

Amber Riley on May 11th, 2009 at 6:44 pm #

Sea Level?? Are you planning a trip out our way??

Debbie on May 11th, 2009 at 7:07 pm #

Ella looks so happy, really happy ~ this mom and daughter day seems to have been great one!

Joel Snyder on May 12th, 2009 at 4:56 am #

Ella, I can’t believe your pictures these days. You are looking happier and seem to be enjoying the time with your Mom so much. Enjoy the weather and I am hoping and praying that your trip to Southern California is a good and safe one. Say hello to everyone for me and have fun. I will catch you before you leave. Love,Grandpa!!!!!!

April's Mom on May 12th, 2009 at 6:18 am #

I just wanted to drop in and say that I am praying for your family. Is there anything specific we can pray for over at His will Wednesdays tomorrow on my blog. Let me know…


Joan and Steve Odell on May 12th, 2009 at 7:03 am #

Oh Ella – you are so precious and continue to progress and grow in so many ways. So glad you are doing so very well. Have a wonderful trip and safe journeys – Enjoy your time Tina and Josh – our prayers continue — hugs Steve and Joan

Heidi Ham on May 12th, 2009 at 11:56 am #

PLEASE call if you have time for a visit while you are all in town – We would LOVE to see all of you!

Liz Nelson on May 12th, 2009 at 9:01 pm #

Ella you always make me smile with your warm contagious smile. You are so beautiful. I am so glad you are getting warmer weather.

Abby Searles on May 13th, 2009 at 8:03 am #

Ella looks amazing…She is getting so big and the smiles just get bigger with every post….So good to see this miracle baby doing well…I know it is from all the Love she is getting at home….Love ya bunches

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