Posted (Tina) in All Posts on May-13-2009

Ella woke up a bit earlier than normal. This ended up not being a good thing when it was time for occupational therapy. We tried to replicate our great session from yesterday, but Ella was not cooperating. She seemed tired and cranky. So, the session ended after trying for 30 minutes. Ella melted down pretty much the entire time and it was hard for her to collect herself. Again, I was convinced that she was just overly tired.

Sure enough, an afternoon nap seemed to cure the cranky princess. That is when I decided that it was time for the camera, thus all the smiles. She was definitely in the mood for physical therapy and had another great session.

It was great because Ella was even more tolerant than yesterday when it came to her weight bearing exercises. She was allowing the PT to maniuplate her arms and legs, forcing her to bear weight. I didn’t post any of these pictures but the PT even brought along a small ball and tricked Ella into weight bearing through her arms on the ball. It was great – Ella had no idea that she was even exercising.

About three times today, Ella retched so hard. Her airway was getting blocked with all her secretions and she gets so upset, it just makes the situation worse. After consoling and increasing oxygen, we did not have any bad mishaps. But it seems like the near passing out moments are all too frequent. I’m not really sure why or what the difference has been except that when she gets upset, she desaturates very quickly these days. And anyone who has spent time around Ella knows that her favorite trick when she is upset is to hold her breath.

So, I had a near pass put moment last night after bath time and 2 different times today. I have to crank up the O2 and even blow in her face gently to get her to breathe. I’m just praying that this is not a sign of something else going on because these episodes seem to have increased since her SVC procedure.

I have several sources for devotional readings. Isn’t it great when the one you choose just speaks to your heart and spirit?

The Source of Hope

Hope can be defined as the desire for something good and the expectation of receiving it. Jesus Christ is the only genuine source of hope, because He alone knows what is best and has the sovereignty and power to secure its fulfillment. All other hopes are grounded on the shifting sands of circumstances beyond our control.

Each of us has expectations for the future, but these often pertain only to this earthly life. Christ promises us the “living hope” of an imperishable inheritance in heaven. Everyday desires will all fade away, but our home in heaven is eternal. This is our ultimate security and anchor when the storms of life are severe.

But how do we endure times of trial right now? Heaven can seem so far away when pain is present and there’s no relief in sight. Hope anticipates a change of circumstances for the better.

And what about times when our situation is not improving—then, what is God doing that is “better”? Peter tells us He is refining our faith, which will result in praise and glory when Jesus returns. This is more valuable to us than gold or even relief from our distress. What a paradox! The difficulties which cause us to lose hope are the tools the Lord uses to increase our faith and hope in Him.

Christ promises us hope not only for eternity, but also for this life. Those times that God does not deliver us from difficulty, we can be sure He is doing a greater work within us. When we finally reach our eternal home, we’ll recognize the immeasurable value of the faith He produced in us as we kept our hope in Him.

1 Peter 1:3-9 (New Living Translation)
All praise to God, the Father of our Lord Jesus Christ. It is by his great mercy that we have been born again, because God raised Jesus Christ from the dead. Now we live with great expectation, and we have a priceless inheritance—an inheritance that is kept in heaven for you, pure and undefiled, beyond the reach of change and decay. And through your faith, God is protecting you by his power until you receive this salvation, which is ready to be revealed on the last day for all to see.

So be truly glad. There is wonderful joy ahead, even though you have to endure many trials for a little while. These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold—though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world.

You love him even though you have never seen him. Though you do not see him now, you trust him; and you rejoice with a glorious, inexpressible joy. The reward for trusting him will be the salvation of your souls.

Joan and Steve Odell on May 14th, 2009 at 8:20 am #

It is awesome that she is doing so well with PT. The weight bearing is incredible. Your PT lady is such a blessing. God has given her special talents. Hugs and prayers continue – Steve and Joan

Joel Snyder on May 15th, 2009 at 3:50 pm #

Ella, I am so impressed with you progress with PT. I am hoping the same will come with OT in time. I talked to your Dad and he and Mom are getting everything ready for your trip. Have a great time. Love,Grandpa!!!!!

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