We have been following up with the local GI and Neurology teams and things are very stable. Her leg pain has been minimal, however, there have been some issues with feeling in them. We have had a few complaints about her legs feeling rubbery and heavy, but this is most likely just nerve issues from the disease. Ana's feeds are going perfect as well as her enemas! This month we will travel to Atlanta for follow-up care with her mito specialist... This should be a very basic follow-up appointment.
Right now we are in the process of scheduling follow-up appointments for Ana in Cincinnati and Sage in Pittsburgh. Ana will have to follow-up with the colorectal team and urology team this year. We were hoping to get urology care switched to our local children's hospital, but that has not worked out. Every appointment has had to be cancelled due to an error with the scheduling... and now Ana is months behind on her urology tests. Sage has to make a trip to Pittsburgh to see Dr. S for her rare food allergy. She has an allergy to rice, called Food Protein Induced Enterocolitis Syndrome or FPIES. We have not been able to find a doctor who is willing to do her trial as rice typically puts her into shock. Dr. S in Pittsburgh agreed to do it after her 4th birthday and the time has come. Our plan is to take both girls in one trip. I will update as I have more details. Please be in prayer about these trips! A donation page has been set up... pray we raise the money needed to get Ana the care she needs.
That is all for now! I hope you all enjoy the new and improved site! Please take a look around and let us know what you think!
From our family to yours, "Happy New Year!"