I’m so proud of this girl. She has so much light to share with the world. She loves her family and her Heavenly Father more than anything and I can’t wait to see how she continues to shine.
They took us to the top of a mountain past Beverly Hills this morning. We were doing some filming for the portion they will show this Tuesday just before her performance.
We arrived before the film crew and had a quiet moment together out of the city to pray together. It was a very special and peaceful time for us after news that Amos had had an excruciating night.
Many doctors feel that upping his pain meds in his condition would be very dangerous. His heart rate is up and he is now requiring oxygen. For this reason, I am flying home for a few days to help him get through these hard days. Many thanks to the good people at America’s Got Talent who arranged that and care so much for us.
The doctors said they couldn’t find a place to decompress the liver. It was very difficult to get the information they were looking for without the scan they needed yesterday. They said trying to use the ultrasound was like comparing apples and oranges. They do show many issues with his liver but see nothing they can do about it. They are going to consult with Dr. Lanauze for ideas.
Amos got some TPN nutrition last night and His billiruben numbers went up to 9.8 from 9.1.
With many people giving up on hope for him, I asked him today what his “hope number” was. He asked me what I meant and I told him it was like the pain number that they are constantly asking him except it was a scale of how much hope he has that he will survive this from 1 to 10. Without another thought, he said “10!” No matter how bad it gets, his hope number is what matters to me.
I can’t explain to you how much I love this partner of mine. Yes, life is harder than it has ever been for either of us right now but we will have each other forever and today is just a small moment in eternity.