Being off the diet has helped her gain some weight. She hasn't been weighed since the hospital and that was 16 pounds. But, she looks like she has gained some weight. Her tummy seems to handle the new formula okay. Whatever disease she might have really plays a role in giving her a bad stomach. She has reflex, gas and constipation...really BAD!
We still give Leah supplements from Dr. Humperies. She takes carnitine, folic acid, COQ10, vitamin D drops, fish oil and some herbs. Now that she is off the diet I am giving her barley water (this helps her tummy so much). We also want to start her vitamin B12 shots again soon.
We are now involved with Rainbow kids and Hope kids (support groups for chronically ill patients). They are wonderful and help us so much. When Leah is in the hospital they come and visit us daily and make sure Leah is getting all the medical care she needs. If we are not happy and need things done they get involved and make things happen fast. They have activities They have done some play therapy with my older kids. The therapist said they are very smart kids and they are coping extremely well. I was so happy to hear that. We work so hard to insure that each of our children are getting all they need.