A Lil' Boy's Journey to Live….

Archive for December, 2020

Very Special Christmas Gift 🎁

Riley received a visit from his Buddy Max. He had a Special Christmas gift for Riley .. a video chat with Sammy Guevara from AEW on TNT. Such a Great thing for both of these guys to do. Sammy facetimed with Riley for almost a hour!
Thank you Both for being so Wonderful to our Riley!! 🤗

Appt with Endocrine (bone health) @childrensPhila

Riley had an appointment Tuesday with Dr Mancilla in Endocrine (bone health). Riley is currently scheduled for a Dexa scan mid January and his Zometa infusion towards the end of the month. Apparently Riley’s last scan showed great improvement in his bone density. So much so that instead of another infusion in 6 months we may wait a year. Of course we’ll see how the scan in January looks. It’s also possible we may do another infusion in 6 months but half the dose. We shall see. Before we left Dr Mancilla ordered a repeat xray of Riley’s thoracic spine to check his previous fractures and to be sure that there isn’t any new ones. In all it was a good appt.
As far as Covid .. Riley is doing Amazingly Well! He hasn’t needed a breathing treatment in a few days. He never complained of body aches like Dad and Christian and his fever always remained low after leaving CHOP. Oddly because Riley is immune suppressed and because he got some assistance at CHOP .. he seemed to do better then most who are symptomatic. As everyone should know though you can get COVID again. So we are right back to living with precautions as we have been doing since the beginning of March.

Hopefully 2021 will be a Better year for All!!

CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday. ❤♻️💜


Update .. Riley is doing pretty good! He thankfully hasn’t had a fever in a couple days. Spoke to lung transplant and we will discontinue the higher dose steroids and go back to maintenance dose and instead of doing the breathing treatment a couple times a day .. it will be as needed.
Riley’s brother Christian is also doing better. Still has loss of smell and taste but we’ve been told that could actually last for a while but isn’t considered a symptom when it comes to returning to the world.
Dad is doing better then last week. Still has some body aches and today lost his sense of taste and smell but everyone’s fever is gone!
Thankfully this SEEMS to be the extent of Covid in the O’Brien household. Assuming nothing changes we have been pretty lucky! Yes we are quarantined. Yes we are out of work. Yes Riley needed some support from CHOP but people are needing long term hospitalization. Ventilator. People are dying. Please wear your mask and wear it right. We will all get through this virus but we need to do it together. Love Your Neighbor.
Thank you all for being on Riley’s Journey with us. ❤

CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday. ❤♻️💜

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