A Lil' Boy's Journey to Live….

Riley’s visit to CHOP went well. He will see Dr Mancilla (Endocrine) again in 6 months. Prior to that appt he will have another DEXA scan to check his bone density. Endocrine is extremely happy with the results of Riley’s previous Zometa infusions but with Riley still growing any new bone growth will not have been treated. So for now he will skip another infusion and see how the scan looks in 6 months. Thankfully no new fractures have been noted from CT and they’ll check the spine again when Riley has his next orthopedics appt and xray for his scoliosis.
Riley also had ‘research’ labs done as part of the Covid vaccine study he’s participating in along with additional labs that Endocrine ordered.
Flex xrays of Riley’s neck were ordered by Dr Drant (cardiologist seen for Loeys-Dietz). Pretty sure this was to get a baseline but if there is anything of concern Dr Drant will be in touch.
Riley’s next appt is in July to see Heart transplant. Then soon after that Riley will be off to Heart camp!!

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

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

Tag Cloud

%d bloggers like this: