Alex update:

Alex has had appointments this week with Gastrointestinal, Surgery, Pain, Endocrine, Nutrition, and Physical Therapy specialties. He is still on tpn and enteral (intestinal feeding tube) feeds, is doing very well on the new hypoallergenic formula, and his window (time he is not hooked up to feeding pumps and not receiving tpn/enteral feeds) has been extended by two hours each week. He has eaten small amounts by mouth periodically (every couple of days), has gained weight, and is now completely off of all opioid pain medication.
He is still nauseous and painful daily, but is now functional and consistently happy. He is having difficulty with back pain (and sleeping because of it) due to being de conditioned, having severely flat feet, and the pars defect; however, today received a referral to a chronic pain/EDS/spine specialist in hopes of addressing these issues.
We have not received results yet from the mixed meal test in regards to the islet cell function, will continue to follow up with all specialties in Cincinnati for at least another two weeks, and are just taking it day by day.
We have been fortunate to have 2 out of 3 siblings with us in Cincinnati, Fabian for another week, and the most amazing support from friends, family, the very wonderful Ronald McDonald House, and all of you wonderful people!!