I didn't realize how long it had been since I had posted anything. It has been a crazy few weeks with the holidays, family in town, going out of town, etc. Needless to say, it is also very difficult to get a few spare moments to sit down with a toddler running all over the house and demanding my attention.
Freddie has decided to go forward with applying for the study. We will be traveling to Bethesda, Maryland. It took a lot of work on his end getting all of his records (which, by now, are spread out around the country) to one place.
In the meantime, he had applied to the drug company that our insurance denied. They approved him. All of his doctors advised him to try the study first and then see if he will need to try the other drug (the inhibitor).
We don't know much about the trial drug. It is a pill he will take for a week, be off for a week, and then travel back to Maryland every two weeks for testing. I think we will know rather quickly if it is working.
Please pray for his healing, safe travels, and that all goes smoothly with getting into this study.
Our greatest joy continues to be our son. It is hard to leave him, though we know he is in good hands, but much easier to see doctors and get tests accomplished without him in tow.
Thank you for your prayers and support. We feel very loved and blessed by the thoughts and prayers from you.