A Lil' Boy's Journey to Live….

​Another 6 week appointment in the books!   Riley’s heart looked Great! Beautiful! His labs were all normal (for him) except for his Tacrolimus level which was low. As they explained it would be ok if he was just heart but since he’s heart and lungs they like to keep his Tac level a little higher. Weight is holding steady. Will keep taking the Periactin but we’ve decreased his dosage to once a day at night because it was making him to sleepy. Cardiology is going to reach out to Riley’s old speech therapist in the feeding clinic to see if they have any ideas or want to see Riley again to help with eating. He has made Amazing strides in the eating department but still struggles some with chewing and gauging what he’s putting in his mouth. His high palate doesn’t help the situation. 

Riley’s next scheduled appt isn’t for 6 weeks. Minus blood work to check his Tac level. May he continue to #BeattheOdds and be the little boy who just loves to live life ..

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