Today we spent a few hours at Mt Washington Pediatric Hospital. We had a two hour appointment and then visited Mr. Connor (a friend of ours, he has the same GI issues as Miss. Addyson). She was beyond thrilled to see him, and us moms/dads got to catch up for a bit. Always nice to catch up face-to-face. Hopefully Connor will be able to leave there with a better flush protocol….hoping he can atleast be more comfortable until his BOSTON Trip! (Fingers Crossed).
Ethen was put on new meds and he goes back in 3 weeks. We are hopeful these will provide better effects.
Addyson has lots of appointments coming up, between GI, NIH, and then BOSTON (in less than 47 days)! So randy and I chatted about some different flush options w a friend and her husband. There are truly so many different protocols and trying to find the right one is hard. Castille soap, glycerin, to pump or not pump, to use Miralax or not. Truly so many different options. At the end of the day Addyson is still not effectively staying clean even flushing daily w high volumes. And honestly she is getting tired of the flushes. She hates being tied to the toliet. She hates missing out on 1-3hrs a day of stuff depending on how many times she has to flush. She hates how her pants don’t fit comfortably because of her tube. She smiles and shows us her brave warrior face but we hear her heartbreak with the tube and it not being the fixed we had hoped for 😢