Winter Update: January-February 2019
We traveled to CHOP in December for Will’s follow-up appointment with the research team. We reported that he had been experiencing a long stint of interrupted sleep and more irritability over the past two months. The team decided to change the dosing of his Baricitinib; they thought he was experiencing breakthrough symptoms. We traveled home to Maine and started our new plan. Over the past two months Will has been happier, more vocal (laughing and squealing), and tolerating being in his stander better. He has also put on more weight and is thriving. Amazing what happens when you’re feeling better! CHOP recommended that we have Will’s lab work checked because he is anemic again. A side effect of Baricitinib is anemia. Since Will has an affinity for red meat, we have been serving him plenty of that. We will recheck his levels in the next week.
Our team at CHOP also recommended that we add a pulmonologist to Will’s team. We found a pediatric pulmonologist in Maine that specializes in neuromuscular diseases. We met with this doctor about two weeks ago and are thrilled to have him on our team. Not only is he trained to manage a kiddo like Will but he has trained at Children’s Hospitals where he had a plethora of experience. We are in really good hands! We are headed back to CHOP the first week of April, and while we thought we had avoided a crazy week of events in Philadelphia, there must be something else going on because we are having trouble finding a HOTEL ROOM! Wish us luck!