Holding on (28 more days)

We are counting down. We are counting down to our chop (Childrens hospital of Philadelphia) neuro-gi appointment. This appointment is very much needed. She needs a gi who can manage her care. She has a great surgeon at Hopkins who we trust but he is a surgeon, not a gi. She needs someone to manage all the new gi stuff going on. We have our Boston care team but they are in Boston and can’t see her for emergencies the day of when she is distended and crying in pain. We need that gi dr. We are working hard to find the right one. We are hoping chop is it! We have seen her get very distended last week and this past week the look on her face when it comes time to eat is so heartbreaking. She just looks at the food and looks at us. You can see that she wants to eat she just doesn’t want to because of the pain it causes. We will keep pushing! We have others in our corner who are fighting this same battle. We are all working together to share lessons learned. Share care teams. Share failures and just support each other. We are trying to figure out what she needs added to her 504 for this upcoming school year regarding missed days, tube issues, her fever disorder, etc. we are just tackling it all one day at a time. 💚


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