Transplant appts @ChildrensPhila ❤️♻️💜

Riley’s transplant appointments on Monday went well.
The only real concern is for Riley’s weight. He lost 3 pounds since October. Riley does eat orally but just not enough. It still doesn’t come naturally, and Riley is a pretty picky eater. So the decision was made to add a gtube feed to his school day. He already goes to the nurse for water so we will add a Peptamen.
Riley’s next appt is with orthopedics next week to see how his arm is healing. Hopefully they’ll be able to remove the cast!
Till then .. Happy Thanksgiving!! 🧡💛🧡💛

(Pic is of Riley and one of his favorite phlebotomists Mitch.)

#CHD #Heterotaxy #LoeysDietz #Transplant #Warrior #BeatingtheOdds Everyday. ❤️♻️💜

Endocrine @ChildrensPhila called .. 💚

Just received a call from Dr Mancilla (endocrine). After about 2 years she believes it’s time for Riley to have another round of Zometa (bone infusion therapy). It will be outpatient since Riley didn’t have any adverse reactions previously. The hope is to do the infusion in January. We just have to wait till his current arm fracture is healed.
Riley’s upcoming appointments are with the heart and lung transplant teams the week of Thanksgiving.

Till then .. Go #Phillies ⚾️⚾️⚾️⚾️

#CHD #Heterotaxy #LoeysDietz #Transplant #Warrior #BeatingtheOdds Everyday. ❤️♻️💜