Thursday

My appointment at Children’s in NOLA didn’t go as well as expected. We got there and everything was going fine. We talked about my 3T MRI results and the test that I need, medications, development,etc. She then told us that they could not do the PET scan that I need at Children’s because they do not have the equipment. So mommy started calling other local hospitals to see if we could find someone that did PET scanning. The problem isn’t finding a hospital with PET scanning. Several hospitals have that. It’s finding a hospital that can do PET scanning on a two year old safely. Well she found one at Our Lady of the Lake Children’s Hospital. Seemed perfect but of course they can’t do it without orders. We knew this and didn’t think it would be a problem. So mommy called my neurologist and she said she can’t write the anesthesia orders that are required because she is not affiliated with that hospital. Yes we could go see another neurologist at Our Lady of the Lake and then if that neurologist will do it, he can write the orders. We don’t want to go to another neurologist. Especially after some of the things that Our Lady of the Lake told us about PET scanning. It’s just not worth it. I have to go somewhere that I trust and know that the test will be done correctly and accurately. We are doing the test to see if I qualify for brain surgery. Someone who does this on a regular basis needs to do this test and evaluate it. So with all of that said we are going back to Boston Children’s for these test. They evaluate kids daily for surgery and we know that we will be in the best hands there. My mommy was so mad yesterday because we can’t get the test done here that we need. After she talked to one of here friends she realized it is just part of God’s plan. We believe that he wants us in Boston and that’s where we are going. I will know definite dates later today or sometime tomorrow. It will be within the next month. I’ll keep you posted. I have to share this verse with you. Our preacher talked about it this week in his sermon and it has stuck with my mommy all week. Just knowing that He is our strength helps us get through the tough times.
Psalms 27:1- The LORD is my light and my salvation; whom shall I fear? the LORD is the strength of my life; of whom shall I be afraid?
Please continue to pray for me. Love ya, Jadon