10-25-10

We went to Iowa City again today to see the hematologist. He had more blood work done and special test to see which type of the congenital dyserythropoietic anemia (CDA) he has. The doctor showed us slides of his bone marrow cells and from that he is pretty sure that he has CDA type 1. They also did a ham test (take some blood and mix it with a special acid to see how it breaks down). His hemaglobin was 8.8 today so he didn't need a blood transfusion. They also tested his ferritin level which is what checks how much iron is in his blood and it came back high at 1231 and normal is 500. The doctor isn't going to do anything about the iron yet until it reaches 3000 and then he would need meds to help with it. With this CDA type 1, it can be treated also with a med called interferon but he has to wait until he is 14 months old to have that. Until then, we will continue the blood transfusions as needed if his hemaglobin now gets below 6 or he is symptomatic.

Since this disease is very rare with only about 300 cases worldwide, our doctor has contacted many other physicians in other countries where this is more prevalent such as Israel. Israel alone has around 70 cases of it and the US has around 30. He is sending some of Oliver's blood work over to Israel to have it tested for a specific type of gene called CDAN1. This test costs $1000 and insurance does not cover it but since his case is so unique, and the doctor wants to use Oliver's condition for research, and they are covering the cost of the test. Our doctor is also writing an article for the New England Journal of Medicine (a prominent magazine in the medical world) about Oliver's case.

Otherwise Oliver is doing great. He's now 8 lbs 11 oz and is still 21 inches long. He's letting Shawn and I sleep a bit more at night averaging around 4-5 hours initially then usually every 3 hours after that. It's sad to think that I'll be going back to work in 2 weeks and Oliver will be going to daycare. Today now marks 33 days home after being in the NICU 33 days so he's only been home half of his life.

Oliver is cooing more than ever and "talking."

He's sporting the Harley Davidson outfit his daddy bought him.