AGAIN!

Faith was admitted to the hospital AGAIN last night! This is Faith’s 3rd admission this month. Faith is continuing to struggle with eating. The two days prior to her admission she was going extremely long periods of time with minimal comsumption.

I have been doing lots of research and gathering more suggestions from the geneticist and genetic counselor at Albert Einstein Medical Center regarding possible causes of Faith’s struggles that could be contributed to the SOX2 anophthalmia syndrome. We had consults today with a neurologist, endocrinologist, and GI doctor. Faith had an EEG and we ruled out the possibility that she could have been having seizures. The endocrinologist is following up with more blood work to check some hormone levels. The GI doctor discussed the G button with us as an option to get food into Faith. The G button(long term solution to feeding problem) is starting to look more and more likely.

Faith is in a scary place to me in terms of her weight. She is 3 months old and only a pound heavier than at birth. We have got to get some answers and find a solution soon. We are back in the hospital indefinitely. The neurologist wants to do a MRI to look at the pituitary and hypothalamus more closely. They want to rule out any problems that could be causing the lack of interest in eating or the early satiety that has been observed in Faith.

We need lots of prayers. Please pray for the doctors working with Faith that they will have the wisdom and knowledge to help Faith. Please pray for Faith to be strong through all of this. Please pray for Mike and I as we are frustrated, tired, and eager for answers. Thanks for your continued support and prayers!