A Lil' Boy's Journey to Live….

Archive for June, 2021

Riley’s visit to @childrensPhila ❤

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. ❤♻️💜

End of 6th Grade. 💚

Second Dose .. 💚

Happy Friday! Second dose done!! Thank you to Pfizer and Walgreens for giving #Hope to brighter days ahead!

Appts @childrensPhila ❤

Riley appointments on Tuesday went well.
PFTs and labs were all within ‘Riley’s range’. Dr Josephson asked if Riley would be interested in being part of a study on the antibodies after receiving the Covid vaccine in solid organ transplant recipients. 100% Yes to that!! So far studies have shown that SOT recipients appear to not have many antibodies even after their second dose. We already figured that would be the case but participating in the study will give us Riley’s actual numbers and if the vaccine offered any other type of protection. Also to be a part of what could be done to offer SOT recipients more protection.
Riley also saw Dr Drant in cardiology. We further discussed Riley’s Loeys-Dietz diagnosis. Really nothing new to add to what has been previously posted. We were able to visually see though the blood vessels in the back of Riley’s head, as seen in the first picture, that have tortuosity. Uncommon for the average person but common with LDS. The good news is the vessels don’t tend to change over time. So they won’t get worse. The second picture is of part of Riley’s aorta. From the root which is donor to his native aorta. One can see from the picture that there is some dilation in Riley’s native aorta. We are being assured that the measurements are not concerning at this time but will be continuously monitored through echo and when Riley has cardiac caths. The type of SMAD2 mutation that Riley has, so far, has shown to cause more issues a little later in life. That being said Riley is still case 1 of 1 when it comes to the SMAD2, Loeys-Dietz, Heterotaxy, Complex Congenital Heart Disease and heart lung transplant in a patient. So we will continue to watch closely and deal with any issues as they may arise.
For now Riley is headed into summer one Happy kid!! He received an invitation back to heart camp CHOP. As long as there is enough space for any new kiddos to attend Riley will be going to heart camp in July! He also is Super Excited to be going back to Liberty Lake Day Camp for 2 weeks in August! Riley has spent 95% of his time at home since March 2020. He’s ready to get back out and Live this #GiftofLife that he has been given!!

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

Tag Cloud