Tuesday, January 22, 2013
Makenna Enzyme Trial Update
The face! This is her face when she is in a mood.
I got a call from the nurse at Dr. Vanderpool's office at Riley Hospital the other day. She called to give me an update. The Doc asked her to call me so I did not think he forgot about us! She said he is looking into the Surcaid trial. He is waiting to hear back from them. He wants to make sure it will be worth it for her, and us to do it. He doesn't want it to be a waste of our time since we have been through so much already. We have an appointment scheduled for April, but hoping to hear before then. It may or may not help her.
There are days when she is in a mood and we can usually get her out of it by getting her attention onto something else. But then it will come and go all day long, sometimes for days at a time. As I have said before, the one thing that frustrates me the most is the rash. I just don't want her to live with that forever. So if it's worth a shot to get rid of that... then it's worth it. So we will see.
Posted by Megan at 4:30 PM