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I guess I was pretty bad about keeping the blog updated during Hudson's KKI stay. After the last post, things went downhill pretty fast, and a couple of weeks were spent just trying to get him back to the baseline he was at before the issues started. We left KKI a week early, because the team thought that Hudson had maxed out the progress he'd be able to make there developmentally. Upon discharge, Hudson was eating 15-20 oz. of purees daily, and we were able to cut his tube feeds by about 24%. We were not successful in transitioning him from the bottle to a cup. The question everyone has asked me is was it successful, was it worth the trip? The answer to that is really so complex that I can't just say yes or no. The reason that Jake and I thought we had to try KKI for Hudson was simple. He didn't eat, and no one could tell us why he didn't. From a quality of life standpoint, we felt we had to find out if, given the proper training and tools, Hudson would eat and maybe even love it in the process! So KKI was beneficial in the sense that we got an answer. Hudson hates eating. He will technically swallow purees, but he shows no sign of actually liking it, in fact most times he tries to get out of doing it. He points to his feeding pump to be hooked up to his tube feed. More importantly, food is wrecking havoc on his little stomach. This was my greatest fear when we started this process, would his body even be able to tolerate food? The reason Hudson is on a specialized medical formula, Elecare, is because as a baby his body was not able to break down and digest regular formula. KKI sent us home on a regimen of twice daily doses of Miralax, as well as enemas for him every few days. I find this a totally unacceptable solution. His reflux is terrible, his belly is very distended, and it is obvious his body is not processing the food well. We saw his mito doctor this week and she agrees we need to find a better solution for him quickly, but she wants us to consult GI before making any decisions. We see GI in a couple of weeks. I don't know what the end result will be, but I do know that we need to make Hudson more comfortable. This is not what Jake and I had in mind when we pictured a better quality of life for him. I do want to say that I feel that the feeding, speech, and occupational therapists at KKI are amazing. They got Hudson to do things that I never thought he would. I really do think it's a great program, and many children there made excellent progress. I think Hudson's underlying medical issues are the reason we didn't get as far, but that isn't anything the team could have helped. We also got the results of our Transgenomic testing back. They tested Hudson, Jake, and me, and we've been waiting for the results for almost a year. This test was searching for the genetic mutation that caused Hudson to have mitochondrial disease. It turned up many variants of unknown significance on Hudson, but nothing specifically disease causing. So this week we drew labs for another test called Exome testing. This test is much newer and can look for many more mutations than Transgenomic could. The results will not be back in time to give us any direction about testing for the newest baby Schaper, but I am hopeful that it will find the genetic cause of Hudson's mito. That is knowledge that would be very valuable to us. The next few weeks will be busy! Hudson has follow ups with all of his doctors, as well as an MRI, 24 hr. VEEG, echo, and an EMG scheduled.