What a 100th day!

Let's just start with it was a great day!

I got a good night of sleep albeit a late night or early morning to sleep and got a few things done here in the room before getting to Tracy's room.

When I got to her room I read the following devotion that was given to us by the DeFluri's.

Here it is.

Open Your Heart



When I am afraid, I put my trust in you. 
Psalm 56:3 ESV



         How did Jesus endure the terror of the crucifixion?  He went first to the Father with his fears.  He modeled the words of Psalm 56:3: " When I am afraid, I put my trust in you."



         Do the same with yours.  Don't avoid life’s Garden of Gethsemane.  Enter them.  Just don't enter them alone.  And while there, be honest.  Pounding the ground is permitted.  Tears are allowed.  And if you sweat blood, you won't be the first.  Do what Jesus did; open your heart.



And be specific. Jesus was.  "Take this cup," he prayed.  Give the number of the flight.  Tell him the length of the speech.  Share the details of the job transfer.  He has plenty of time.  He also has plenty of compassion. 



He doesn't think your fears are foolish or silly.  He won't tell you to "buck up" or "get tough."  He's been where you are. He knows how you feel.



And He knows what you need.



From Max Lucado's "Grace for the Moment"

Needless to say that was something I needed to hear.

I had contacted the National Institute of Health (NIH) on Monday to see if Tracy would be a candidate for their Undiagnosed Disease Program.  Tuesday I heard from Patti Crowe who had provided me with the NIH lead from Dr. Petrozzi, a family friend of hers.  I am so thankful for her efforts as this lead has also lead to a direct contact at NIH, that may be of help getting Tracy there if needed.

  

Then there was more good news.  Dr. Paretti was back on our case!  Sorry Dr. Kim, but it is great to have the doctor that started the whole Mayo thing back with us.

He basically said that he agreed with Mayo's request for more testing and not transferring her.  He also agreed that we should probably start with treatment for paraneoplastic syndrome which was what the test they requested were for.  He had already written and ordered for the treatment, intravenous immune globulin (IVIG).  He said that we could wait until the results came in or we could start it today.  He felt that we had nothing to loose, as the side effects would be minimal. 

They would do a test dose of the IVIG and if there were no reactions they would follow up with a full dose later in the evening.

There were no reactions and Tracy actually seem more at ease to me.  She was still agitated when turned but otherwise seemed much more relaxed .  So about 7PM they started the actual dose and all went well as she was just finishing up the first dose when I head back to my room.

I did some Googling and found many similarities to Trace's symptoms, time for the disclaimer, I am not a doctor but the similarities were striking. 

As you know we have Great Faith in God and I truly am feeling great comfort as I head to sleep to night. 

So, God has given us "Grace for the Moment", Grace for a lifetime!

God Bless and "Never Give Up... Never Ever Give Up!"

Rob