A Lil' Boy's Journey to Live….

Archive for August, 2019

Update .. 💚

Update .. We are still waiting on the final results from Riley’s procedures last week. After some more research and talks with the team we are going to go ahead with the MRI to rule out Riley having Chiari malformation. This will be done during Riley’s admission in October for his bone infusion therapy. Riley does have several of the many possible characteristics listed under chiari malformation. Could also possibly explain Riley’s frequent headaches located at the bottom back of his head. We don’t know but MRI is the only way to find out. If Riley’s doesn’t have chiari malformation then it will be another thing we will check off the list. It’s horrible to have to continue to expose Riley to all this radiation but HE wants answers as much as everyone else. So we will continue to do whatever we need to do to give Riley the Best quality of life NOW!!

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

~ EDIT .. have learned since posting this that MRI’s don’t use radiation! Thank Goodness! Riley has been exposed to a lot of radiation already in his 11 years.

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Riley’s Triple Scope @ChildrensPhila .. 💙

Riley’s triple scope was done on Thursday. Unfortunately there isn’t a cleft. We will have to wait till next week for the rest of the results from pulmonary and GI. Now we will go back to plastic surgery and see if surgically repairing Riley’s raised palate could help. Also going to schedule a MRI of the brain to see if there’s some abnormality that could be causing his delay in swallowing. This will be Crushing to Riley but we can technically tell him we’re still gonna try plastics, MRI etc. Just keep buying a little more time until we need to make quality of life decisions. ❤♻️💙~ Riley is still working through the whole process of getting an IV but he wanted to share how Great he is at getting it out with a little help from #OldTownRoad .. 😉

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