A Lil' Boy's Journey to Live….

Riley went to @WWE .. 😊

Riley went to WWE RAW on Monday night in Philadelphia. Had the Best time Ever!!

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Great night at the Monster Factory! Riley Loves seeing all his #Wrestling buddies! Couldn’t think of a better way to spend a Saturday night!

Update .. Oncology looked at Riley’s CT and from what they could see they DID NOT see any PTLD! As Awesome as that is they couldn’t see Riley’s gut as they put it so they couldn’t see if PTLD is there. Soo .. Rather then put Riley through something else right now we are going to wait. We have increased his overnight gtube feeds back to 5 nights to try and help with the weight loss and will continue to keep his immune suppression meds decreased. Riley will see heart transplant in about a month and at that time we will check his weight and EBV again. As you maybe can tell this will be an ongoing thing. Forever. Depending on how things go the next step would be to check Riley’s gut which will be through a colonoscopy.
For now .. Riley is living and loving life! Happy to be back at school. We will cross the next bridge when we get there. ❤

#CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday .. 💚

Riley’s appt with lung transplant went ok. PFT’s looked good. Unfortunately Riley is down 3 more pounds. Putting weight on has been a struggle but to have lost 3 pounds since July is concerning. Reason being Riley’s EBV counts have also been high. If the EBV results come back high again today pulmonary is going to order a full body scan to check for PTLD. Just the thought is terrifying! Please cross everything you’ve got that Riley’s EBV miraculously went down and that if it didn’t the scan doesn’t show any signs of PTLD. Will update when know results.

#TransplantisNotaCure 💚

Riley and Dr Goldfarb ..

Riley ready for his PFT’s.

Riley had a pretty uneventful visit with Heart Transplant on Monday.
Blood work .. EKG and Echo all looked Good! Weight is still only 54 lbs but we’ve decided not to make any changes right now as far as nutrition. That may change in 6 weeks when Riley sees Lung Transplant though. For now we know he hangs out below the 5% percentile and that’s where he always was before transplant. He was so beefed up after transplant that we’re still trying to gauge where he is going to fall long term. As long as Riley doesn’t fall off the chart he should be ok.
Riley’s next scheduled appts aren’t for at least 6 weeks. So we are heading into summer on a high note. Riley is finishing up 3rd grade. Excited for family vacation in a few weeks and going to camp in August!
Words could Never express the our Gratitude to Riley’s donor and their family for making it ALL possible. ❤

#CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday.

Riley is 10!!

Riley turned 10 April 4th!!

10 years ago at this time I was trying to sleep knowing in a few short hours I would be headed over the bridge to give birth to a child that at the time was safe inside of me but would fight for his life once he was born.
Thankfully Riley was able to wait till he was four days old for his first open heart surgery but then 3 months later he was headed back in for another OHS. Soon Children’s Hospital of Philadelphia became our second home.
By the time Riley was one and a half he was listed for a heart and bilateral lung transplant! During the almost three and a half year wait Riley was on 5 liters of oxygen and having cardiac caths done every 6 to 8 weeks. He struggled with eating and walking and talking and just breathing but he was always a fighter! Every battle he faced he came out winning!
Now he is turning 10!! It’s the most Amazing thing Ever to be able to say that .. Riley is turning 10!!! I remember when Riley turned 3 and how Amazing that time was! He has beaten every statistic thrown his way and continues to do so every day!
I couldn’t be Prouder to call such a Warrior my son!
Happy Birthday to my Miracle!

#CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday .. #GiftofLife

Riley had the Flu. ❤

Update .. Sorry for not updating Mom’s blog sooner.

Riley was admitted to CHOP last Sunday running a high fever. Turned out he had the Flu. He was inpatient for 5 days.

Since being home he developed a slight cough but other then that has been doing Great!

Also .. Riley results from his biopsies came back. ZERO Rejection!!

Finally .. In 2 weeks Riley will be 10 years old!! Yes! 10! Never imagined saying Riley’s going to be 10 yet here we are Thanks to Riley’s donor and their family! Forever Grateful … 💜💚

https://www.facebook.com/Smile4Riley

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