Making progress

Thank you to those who sent items off the medical wish list for Addyson. Every item on there is something she needs/uses daily. We appreciate the help!

This week Addyson had a gi appointment with her motility specialist. The appointment went well. He said we need to see the surgeon about fixing the prolapse and dilation of the stoma. He also said we could do the g tube and muscle biopsy at the same time if the orders get put in in time. He also said that we can schedule repeat colonic manometry testing for this summer however he was hoping to attempt a pretty big procedure in February. He no longer thinks that is feasible at this point. He said her small bowel is having issues even with the ostomy also he doesn’t want to add any more variables into the mix. He said if we can hit a point of one – two years with out so many complications then we could talk the next procedure.

Addyson got to participate in virtual meet and greets with the following folks.

· NASA Astronaut Christina Koch

· High School Musical Actress KayCee Stroh

· The Flash Superhero Grant Gustin

Thank you Childrens National (dj curly q and dj Becca bo for always brightening her day).

Addyson has some big appointments coming up. We are finally meeting with the mito team at chop (it’s been a 7 month wait). We also are meeting with the surgery team there about fixing her stoma and we are seeing the autonomic dysfunction team (last saw them in feb). She has been moved from the autonomic dysfunction dr to the autonomic team so we will see everyone at one time (cardiology, pt, gi, neurology, nutritionists, social worker, pharmacists, etc). This should help tremendously to have everyone in the same room. They told us to prepare for a 7hr appointment. They will all consult after the appointment and provide a plan.

Thank you shadow buddies for the ostomy buddy. She loves it.

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