Ava was born on June 30, 2008 after a normal pregnancy and delivery. She refused to eat the first day she was alive.
At her 1 month check-up, her weight had plummeted on the growth chart. We started monitoring her formula intake and realized that she was only taking in about 10 ounces a day. Within a couple of weeks, her intake levels steadily declined.
She was hospitalized at 2 months after a dry morning diaper and only eating 6 ounces during the previous 24 hours.
She had an NG tube placed during that hospitalization and endless testing done. Not one abnormal result was discovered. We were discharged after 8 days.
Ava was again hospitalized at a different hospital 2 months later for massive amounts of testing. Again nothing was found and we were sent home.
At 7 months, Ava started vomiting and she was admitted to the hospital again...this time for 12 days. Once again, nothing was found. The doctors were unable to stop her vomiting and sent us home. Ava's g-tube was placed during this hospitalization.
At this point, we put Ava on a homemade diet that I designed to meet all of her nutritional needs and she absolutely came alive within the week. Her vomiting stopped with the first feeding, she started crawling after 3 days and sprouted teeth within a week. I credit how she is today with the quality of her formula during critical growth times.
In September 2009, we moved back east for 6 months in hopes of finding a diagnosis and/or treatment for Ava. After more doctors and specialists, tons of consultations, and lots of stress, it was determined once again, that no one had any idea what was going on with our daughter.
We returned to California in March 2010.
Ava does not qualify for any assistance because she is totally normal. She is unable to qualify for OT, PT or any kind of T because she has met and exceeded all milestones. We are unable to get feeding assistance because she knows how to eat, knows how to manipulate food in her mouth, and knows how to swallow...we just can't get her to do it.
At this point, we have a GI following the care of her G-tube, but beyond that, she sees her pediatrician for "well visits".
My husband and I feel that her stomach and brain don't communicate and we just have to wait for her to get a bit older and tell us what's going on. We truly believe that one day she will either tell us why she doesn't eat, or peer pressure will have some effect.
She may, at some point, opt to tube feed herself for the rest of her life...I'm OK with that. She's beautiful, smart, healthy, happy, and a normal kid. I'm not going to waste her childhood trying to force her to eat when there is obviously a brain issue related to her hunger center.
So we go about life like a "normal" family...
We still keep our eyes and ears open for a diagnosis and we are always curious as to a possible cause of her "illness", but she's still just a kid. She needs to run and play and jump and laugh.
Nowadays, the focus is not on the g-tube and food...it's about having fun, laughing, playing, and just being a happy family.
