A Lil' Boy's Journey to Live….

Archive for January, 2018

Visit with Heart Transplant @ChildrensPhila .. ❤

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. ❤

Appt @ChildrensPhila .. ❤

Update .. Riley had an appt Monday with a fluency specialist at Children’s Hospital of Philadelphia. Reason being what seemed to be a stutter had started about a year ago. We waited a little to see if it would play it self out but it didn’t. That being said we learned that Riley doesn’t actually have a stutter but an issue with fluency. Disfluency. So we have been given a exercise to do at home everyday over the next 5 weeks. After the 5 weeks we’ll review Riley’s progress and go from there. 

While at CHOP we picked up a case of high calorie drinks from lung transplant. Since we were there we had Riley jump on the scale. He is now down to 54lbs from 57 the week of Thanksgiving. Not sure why he is still losing weight. Being that we were with the social worker picking up drinks and not there for an actual appt we didn’t talk to anyone about his weight. Debby (SW) is going to pass it along to Allison (nutritionist) and Dr Goldfarb. Thankfully in 2 weeks Riley has an appt with heart transplant and it surely will be a topic of conversation at that time. 

For now we will work on Riley’s fluency and get him drinking some high calorie drinks. Which are meant to eventually replace his overnight feeds. Fingers crossed .. ❤

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