A Lil' Boy's Journey to Live….

Archive for April, 2014

#Donor Dash Pictures .. ♥

Pictures from the Donor Dash .. Philadelphia .. 4/13/14 ♥

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* The Results from Riley’s CT Scan *

Riley is NEGATIVE for PTLD!!! There is some scarring from when Riley had Paraflu and illness right after transplant but nothing that is causing an issue right now. As we have done since Riley was born .. We’ll run with any Positive news we get! The underlying reality is Riley is at high risk for PTLD. We have no idea when the need for another full body CT scan will be. So for Now .. Today .. We Celebrate!! ♡♥ 

♡ Quick Update on Riley ♡

Riley is Home. He was discharged earlier this evening. The team is comfortable with Riley’s kidney numbers so there was no need to stay the night.
Preliminary reports looked good from the CT. We will have the final report Tuesday. Fingers .. Toes and Anything else that you may be able to cross that the final report shows Riley Negative for PTLD! There is No Need for him to Stop Defying the Odds Now .. ♥

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  Riley waiting to go for his CT scan ..

Riley’s 6th Birthday Celebration .. ☆

Pictures from Riley’s Birthday Party ..

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Happy 6th Birthday Riley!!!

6 years ago at this time I laid in bed knowing that tomorrow Riley would be born. They had told me for months that he was Ok inside of me. It was when he was born that he would have to fight for his life. Everything they said was true and boy has he fought! Riley had a 50% chance of living after he was born. That was in the immediate. He then had a 50% of living to his 1st Birthday. He beat both of those odds. Dr Spray had even said when I was still 5 months pregnant that Riley would ultimately need a Heart/Lung Transplant. He said if Riley beat the early statistics that he wouldn’t make it past 5 years old on his own function. Sure enough a month before his 5th Birthday Riley received his Gift of Life! Thank God! Now Riley is about to turn 6 years old on the 4th and he is still beating the odds! I never imagined saying Riley is turning 6 yet here we are! Riley is Truly a Miracle .. a Warrior! He has fought and won more battles then most adults could even imagine confronting! He Deserves All the Joy .. Love .. Happiness .. that life has to offer! Riley makes me Proud to be called a Heart Mom .. a Transplant Mom! Riley along with his brother Christian make Life worth living! Happy Birthday to My Hero .. Riley!! May God Grant You Another Year Full of Miracle .. ♡♥ Mom

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Riley Gets to Be a Normal 6 Year Old Boy .. If Even for a Day ..

We were waiting on the Blessing from Riley’s Transplant team at CHOP before posting the below …

We are very close to celebrating Riley’s 6th Birthday .. Yay! On Riley’s 5th Birthday he was one month post heart/lung transplant with ongoing fevers and on his second round of renal failure. Nevermind becoming vent depend and planning his upcoming Tracheostomy.
This year Riley is Home! No fevers ..  No renal failure .. No vent and No more Trach! He actually knows his Birthday is Friday whereas last year he had No idea it was his Birthday.
Soo .. This Sunday .. with Riley’s teams Blessing .. We are heading to Chuck E. Cheese! Riley has never been before. It has always been way to much of risk with all the kids and germs flying around. Those same risks are still there but we are going to use precautions. Riley will be masked and chased around with hand sanitizer, but the fact that I just said we would be CHASING Riley around makes it worth it! For more then 5 years you never had to worry about chasing Riley anywhere but now he is almost like having a toddler! He is everywhere and into everything! Doing .. Seeing .. Exploring all the things he never had the Energy to do before!
He deserves a day to run around with all the other kids! To just be a kid! I think you all would agree 🙂
When the day is over we will scrub down and pray for the Best but for Sunday .. Riley gets to be a Normal little boy celebrating his 6th Birthday!

Visit Riley’s FB page for more info ..

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