So last week, I filmed/photographed (camera phone) Roman for a full 24 hours to give a peek at what a day looks like for him, living with Thalassemia. It's a pretty simplified version, but I think you'll get the idea.
There are varying degrees of Thal, Roman's is the most severe. His day-to-day life now is vastly different than in China, where he did not have access to proper medical care, due to cost and China's blood shortage. For the most part, he and others with Thalassemia live normal lives. Most of the people we know with Thalassemia are other children who were adopted. Depending on their beginning circumstances, they may have other related complications- medical or emotional.
One thing I did not explain in this video are his ear drops. That issue is not Thal-related, as far as we know. Roman has not been able to pass a hearing test since he got home a year ago. He has had multiple {bad... gross} ear infections and several cases of severe swimmer's ear. Every doctor that looked at him said something was wrong, but they were not trained to see what specifically. We finally saw the ENT, and it turns out- 90% of Roman's ear drum is gone. All three bones inside his ear have eroded into almost nothing due to constant drainage. Unfortunately, whatever is causing the drainage is likely on the other side of his ear drum and can't be seen. He is scheduled for a CT scan in a couple weeks and we will go from there. He will also be having a sleep study, as his tonsils are so enlarged they are touching each other (and have been as long as we've known him), making it difficult for him to breathe. His heart needs to be monitored closely- which is related to his Thalassemia and the medicines he takes daily.
The plan right now is to then have surgery to remove his tonsils and reconstruct his ear drum. That will help structurally, but he would still need a hearing aide in order to hear. This is best case, depending what the CT scan finds.
Anyway, if you have questions about Roman's life with Thalassemia, take a few (7 1/2) minutes and check out the video!
*The first video within the video is a little quiet...
Nathan: What is this?
Roman: My port.
Nathan: What is your port for?
Roman: For transfusions.
Nathan: What is this?
Roman: From my surgery.
Nathan: What is this?
Roman: It's for my pump, how I get medicine in it.
Nathan: And why do you have that?
Roman: Because I've got Thalassemia!
Side note: He is never that bashful.
