A Lil' Boy's Journey to Live….

Archive for February, 2020

Swallow Study @ChildrensPhila .. ❤

Riley had his swallow study today. HE CAN DRINK AGAIN!!!! As you can imagine tears of Happiness were shed! Of course it’s not a free for all. Riley needs to use VERY small straws. Like the ones found on drink boxes. It’s ok though .. he can drink and he can drink whatever he wants not just water! Drinking for now will be for pure enjoyment. He will continue to get fluid/nutrition through his gtube. One thing at a time. We’ve already stopped to buy orange juice for the morning and drink boxes for lunch. Since April Riley hasn’t been able to drink and went through a triple scope, laryngoscopy and a MRI only to not find any answers. It pretty much comes down to smaller amounts being drank plus a little technique.

In the end .. Today is a day to Celebrate!!!

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

Visit with Heart Transplant @ChildrensPhila ❤

Riley’s visit with heart transplant went well.
Labs, echo and EKG all look good. Next visit he will get a 24 hour holter monitor.
Coming up next is Riley’s swallow study Feburary 11th. Following that will be his 7 year post transplant cardiac catheterization and bronchoscopy. Still working on coordinating the different docs but are planning for a procedure date the first week of March. Will update once we have a date. ❤

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