A Lil' Boy's Journey to Live….

Archive for June, 2017

Riley is Officially a 3rd Grader .. 😎

Riley has Successfully made it through his first year ‘in’ school with only 2 hospital sick stays! He is so Proud to call himself a 3rd Grader!!! Thank you to Riley’s teachers .. aides .. therapists and his ‘School Mom’ (you know who you are) who helped Riley transition from home to school and have been so Wonderful to him and our family throughout the year!!

Love You All .. ❤
#CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday .. 😎

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Heart Transplant Appt @ChildrensPhila .. ❤

​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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