A Lil' Boy's Journey to Live….

Update from Monday’s Heart Transplant Visit ..
Sorry for the delay. Labs .. EKG .. Echo all show Riley’s heart looking and functioning beautifully!
Riley’s weight was still 54 lbs. That’s down 11 lbs from about a year ago. Although everyone agrees that Riley needs to gain some weight versus losing it .. Heart transplant thinks its ok if Riley stays in the 10th percentile. He was always a small child. That is until we beefed him up after transplant. He could just be settling out. So we’ll double up on the high calorie drinks everyday and continue overnight gtube feeds twice a week and see if we can get his weight up some. Just needs to stop losing. Mind you he is still working on eating orally and getting his caloric intake by mouth and in the big picture he is doing Great at it!
Riley’s next appt should be pretesting for his 5 YEAR bronchoscopy and heart cath in March!! 5 YEARS!!! Such an Amazing Blessing to even be able to say that! Riley has come so unbelievably far not just in 5 years but in April it will be 10 years that he started this fight to live! He has won every battle to date but really since his #GiftofLife is when he began to actually live! Go to school .. have friends .. eat .. sleep in his own room .. not be in the hospital every other month etc. We are forever Grateful!!!
Thanks for being on this Journey with us. ❤

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