A Lil' Boy's Journey to Live….

Archive for May, 2022

Swallow study.

Update. Riley’s swallow study actually looked similar to the one he had a few years ago when he was cleared to drink, but without really using any techniques. He used a small straw, a regular size straw and no straw all with similar results. Chicken nugget seemed to go down without issue. The speech therapist was actually quite pleased with what she saw given Riley’s history.
We are not making any changes to Riley’s intake though until after we talk to his team and further investigate the cause of the ‘fatty cells’ in the lungs.
Given that Riley’s heart has looked beautiful for 9 years we have decided to start seeing both transplant teams on the same day (every 3 months) instead of one every 6 weeks. So June 6th he’ll see his transplant teams and then June 15th he’ll see Dr Ryan (GI) and Dr Ruiz (ENT). They may want to repeat an impedance probe. We shall see.
Until then .. Happy Memorial Day Weekend. 🇺🇸

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

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