Erika is finally gaining weight!  At 14 years old, she now weighs 50lbs.  And is 4 ft 2 inches.  We still expect her to grow.  She is not in puberty yet and the growth plate is still open so we should still see improvement.  At the CHARGE Syndrome Conference last summer, we heard about Botox to the Saliva Glands to help reduce secretions.  It is still quite new, but we thought we would try it.  Unfortunately, when we got to the hospital, the anesthiologist was not comfortable sedated her so we decided to put the procedure on the back burner for now. We used some of the Botox in her hamstrings instead to help with the tightness in her muscles.  She is starting to take a little more liquids through her mouth, hopefully this will improve.  We did so more Hyper baric Oxygen Therapy in the fall before we went to the intensive Therapy Program.  This last year we went to the Michigan Program.  It was only 3 hours  a day for 3 weeks. She made some improvements in her upper body strength.  We are going to go back to the California Program in late March, I feel the 4 weeks 4  hours a day was more helpful.  She has been improving with her walking, she walks down the hallways at school in her special crutches with the assistance of her Physical Therapist.  She gets very excited.  The classroom teachers have to close their doors because she can get very vocal with her excitement.  She does not say words but her voice can say a lot!  She had respiratory problems over the Holidays this winter.  She had to go back on Predisone for a while.  She finally worked through it.