Sorry for the lack of updates lately! We have been busy, busy. My mom came for a 2 week visit and we had a wonderful time with “Texas Grandma.”

Carmen’s G-tube surgery is scheduled for January 31st and she will stay in the hospital as long as 4-5 days but we are hoping more like 3 days.

I was thinking today about how different Carmen’s life has become in six short weeks. Six weeks ago she was still eating by bottle and was taking no medication. Now, she is only fed by tube and is taking 1) Keppra two times per day for seizures, 2) Prevacid two times per day for reflux, 3) Reglan three times per day to help empty her stomach and reduce reflux, and 4) Pulmicort two times per day and Albuterol as needed for breathing. Carmen also gets occasional Milk of Magnesia when prune juice doesn’t work for constipation and Robitussin to help her cough. My guess is that the list of medications is going to get longer as this disease progresses. Once Carmen has the G-tube, I have quite a few natural things that we will give her. My sister-in-law, Trish, has helped me come up with some ideas for things that will improve Carmen’s immune system and help fight colds. I decided not to risk putting anything down the NG tube except what is absolutely necessary! It is not worth clogging the tube and having to pull it out and reinsert! I’ll write a summary of the natural stuff we are giving Carmen at a later date.

Our insurance approved 6 more months of night nursing! This is a HUGE answer to prayer. Carmen has wonderful nurses and I sleep like a rock because I know she is safe and in good hands