"I wish I had better news for you today..."

were the first words our Pediatrician said to us when we took the girls in on Tuesday. Immediately my heart just sank. I knew we needed to make some decisions about Payton and her iron defiency, and I had a bad feeling about Addison's newborn screen when the doctor wanted to see us to go over the results. Why would they need us to come in if the results were normal?

Lets start with Payton... She has been on iron supplements since the beginning of November and her hemoglobin and iron levels really haven't gotten any better. Granted, she is not great at taking it, but she does take the full dose once a day just great (she should be taking it twice, but you try and tell her that!). So it shouldn't be getting worse. In January her hemoglobin was 10.1 (they want it to be over 11.5) and her iron was 18 (it should be between 35 and 100). Last week she had her blood drawn again and her hemoglobin was 10.0 and her iron was 12. So she is losing iron somewhere. Our pediatrian doesn't know why or where... she has checked everything that is obvious. So now we are going to go to the Mayo clinic to a pediatric hematologist. Hopefully we can figure out what is going on with her.

Addison's scenario is much more worrisome to me. Thank goodness for Brian being so level headed or I would have had a nervous breakdown in the office! So her newborn screen (which screens for multiple genetic disorders) done at the hospital was positive for TWO things. First of all she was positive of Bartts Hemoglobin. This is not too big of a deal... it means that she is a carrier for Thalessemia (this is a type of anemia in which your red blood cells are smaller and paler than normal, the type Addison carries is not the severe form). My sister Nicole had Thalessemia so this is not a big shocker. Addison does not have this, but she will need the think about it if she marries someone who is also a carrier. Her kids then may get Thalessemia. The other thing she was positive for is Cystic Fibrosis. She screened for only one gene mutation, and you need 2 mutations to have the disease. The newborn screen tests for the more common mutations, so there is still a chance that Addison may have a unusual mutation that wasn't screened for. For those of you who don't know much about Cystic Fibrosis it cause thick and sticky mucous production that causes lung and digestive problems. The median age for someone with CF is mid 30s. Our pedi did tell us that the majority of kids who screen positive for one mutation just end up being carriers, NOT having the disease. So Addison at the very least will be a carrier (1 in 30 people in the US are carriers and don't even know it). Obviously either Brian or I are a carrier... So now we go to Mayo to have the diagnostic test done. They will test Addison's sweat for high chloride content. So it is not invasive. Our pedi also told us that the majority of kids with CF will have shown some symptoms by now (breathing or stooling difficulties) which Addison has not shown at all.

So that is the details for now. That was a just horrible morning. I am SO happy that Brian was with me. It is too early to really worry, but I am a hormonal post-partum woman! Although I would be worrying even if I wasn't... We will keep you posted.