A Lil' Boy's Journey to Live….

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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 .. 😎


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 ..

Having a Better Day @ChildrensPhila ❤

​Riley is finally having a better day! His fever has been down since late last night. The cough has arrived so we have increased his Albuterol. He tolerated his overnight feed at half strength so the plan is to go to full strength tonight. All goes well and Riley will be discharged Saturday after rounds. Yay!! ❤

Riley’s still @childrensPhila .. ❤

Not to much to update right now. Riley’s fever has been up and down. Right now it’s down to about 100. A couple hours ago it was over 103. He wasn’t able to tolerate his gtube feed last night so he ended up getting Pedialyte. He seems to do ok eating orally but unfortunately Riley just doesn’t eat enough yet so most of his nutrition comes from his overnight feeds. 

So we will see how today goes. Its really all about just supporting him as he fights through the Paraflu. We have cut his azathioprine dose in half to give his body a little bit more strength to kick Paraflu’s butt!! Will update if anything changes .. ❤

Riley has been admitted to @ChildrensPhila .. ❤

​Shortly after coming home from school on Tuesday Riley stated that he didn’t feel well. Took his temperature and it was up over 102. A call was made to lung transplant and they said to bring him to the emergency dept at CHOP. Many test results are still pending but his white blood cell count was elevated .. Indicating that he’s trying to fight something off. So Riley has been admitted to 8 south. Will update when we know more! 

Please visit Riley’s fb page https://www.facebook.com/Smile4Riley/ .. ❤

 Riley’s First Wrestling Experience .. 😎

Thank you to Glenn Ruth .. aka Thrasher from WWE HeadBangers for inviting Riley and Family to wrestling at The Monster Factory. Needless to say Riley had an Amazing time!!

Riley’s Journey 4Years Post Heart/Lung Transplant .. ❤

Great Story by our friends at the Courier Post on Our Riley! Includes videos and pictures from throughout his Journey .. ❤

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