Posted (Tina) in All Posts on April-17-2009

For some reason, Ella’s cold got worse last night into this morning. She was requiring about 1.25 liters of oxygen overnight and during today to maintain her color and saturation. This is nearly double the amount for her. And it is simply because her nose is so stuffed that she can’t get her needed oxygen therapy through her nose. I feel so bad for her and yet despite the fact that she feels crummy, she still manages to smile.

Yesterday, we experienced a lot of rain that was a mix between snow and rain as the temperature fluctuated. Then starting about the middle of today, it stayed cold enough for the snow to stick. It is not supposed to stop snowing until mid-Saturday. So, we are stuck inside and get to look out the windows and enjoy the snow!

Even though the snow was heavy, the nurse still came to see Ella this morning. And although she could hear her congestion, she confirmed that her lungs still sounded clear. That was a relief. Also, Ella weighed in at 10.73 kilos which is 23.6 pounds. It is almost unbelievable to see how she has gained weight since her SVC procedure. From October – the end of February, we went from 7.8 kilos to 8 kilos. Very little weight gain over 5 months. Since her SVC procedure on February 25th, she has gone from 8 kilos to 10.73 kilos, in just under 2 months. Man, it is so much easier to get her to gain weight, now that we do not have to worry as much about fluid issues! Praise God!

And even though the snow got heavier in the afternoon, the PT made it through the snow in her 4-wheel drive vehicle. Ella always enjoys her time of physical therapy. At least today, the cat was asleep and did not try to intrude on the session!

As we prepare for the weekend, we are taking to heart the words of Dr. Charles Stanley as read in a devotional excerpt:

During this life, hard times are inevitable. Some watch a loved one suffer and die; others are wrongly accused or mistreated. Then there are people who endure crippling ailments. The range of human pain is broad, but there’s only one place of true comfort.

The bible speaks of great calamities, some due to natural causes and some caused by men. We often feel bewildered during such trials, but scripture tells us where to turn: God’s followers should be still and remember that He’s the sovereign Lord of the universe. In our world of cell phones and deadlines, it’s hard to stop for even a moment. But the key to dealing with difficulty lies in trusting the One in control of all things.

Instead of trying to manage the situation ourselves or pointing a finger in blame, we should actively wait, watching for God to move and trusting that He will act on our behalf (Isa. 64:4). This involves taking time to be alone with our Father—crying out to Him, meditating on His truth, and listening.

Human instinct urges us to take matters into our own hands; in contrast, the Lord requires that we patiently and expectantly wait upon Him. He also tells us to surrender what we think is right and instead submit to His plan. Unless our focus remains steady on Jesus, circumstances can overwhelm us.

Isaiah 64:4 (NIV)
Since ancient times no one has heard,
no ear has perceived,
no eye has seen any God besides you,
who acts on behalf of those who wait for him.

Kristen on April 17th, 2009 at 8:20 pm #

These words are so true. . . as we go along the way we find that He is trustworthy. . .Sweet dreams Ella Bun.

Williamsburg on April 18th, 2009 at 7:07 am #

Glad you and your “support staff” made it safely through the day yesterday; prayers for the same today in this beautiful mess. We keep you consistently in our prayers to feel better, sweet Bun, and for your precious parents as well in their intense faith journey. Praise God from whom all blessings flow, and who holds us all in the palm of his infinitely loving hand. We love you guys. XOXOXO

Joel Snyder on April 18th, 2009 at 9:03 am #

Ella, Good to hear that the OT and PT made it to visit you. Sorry that the cold seems to be hanging around. I am at home keeping Manny and Maggie company while this snow storm passes us. I hope you have a great weekend and lots of fun with Mom and Dad. Catch you later. Love,Grandpa!!!!!!!!!!!

Michelle Herman Skeels on April 18th, 2009 at 5:03 pm #

Just got caught up on the past week. First of all, congratulations on your anniversary – wow, that is a long time! I also just poured over the String of Pearls site. What an amazing organization – such a beautiful way to honor a baby and provide compassion and understanding to parents. I’m glad that you will have these people and their experiences to lean on during this difficult time…

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