Sorry this update is a bit delayed. Lily's trip to Boston in April was a success. They were able to dilate her esophagus and break up the scar tissue. The doctor told me it's not common, but the scar tissue can reform. So in typical Lily fashion, she is that small percentage. However, he also told me that he's optimistic that it won't come back again after this last procedure. And man what a difference it has made. Lily used to struggle eating certain foods (mostly meat) a lot. We would cut up her food very small and remind her to take a drink between every bite. Now she can eat all the foods she used to struggle with no problem. A couple days ago, she ate a whole cheeseburger from Culvers and I didn't even cut it up! That's incredible for her! It shows how much that scar tissue and narrowing was affecting her and I just thought it was normal for her. Ugh. We have a virtual follow up visit with Dr. Ngo in a couple weeks. I'm glad we'll be able to tell him that things are going great.
Lily's iron has been low for the last 8 months or so. We started her on an iron supplement, but it continued to trend down. We even increased the dose, but it didn't help. So when they checked her labs in April and her iron, hemoglobin and other levels were still low, we talked about a few different reasons why it might be. Dr. Ngo ordered a stool study, which was negative, and also a consult for hematology. We went to see a hematologist in Milwaukee at Children's and she was confident based on her lab values that it was iron deficiency anemia caused by a few factors related to her anatomy and the medications that she takes for reflux (not something more serious or scary- bone marrow issues being my fear). So she ordered 2 iron infusions. Lily had her first one today and she'll have the 2nd one next week. The idea is that oral intake of iron isn't as effective as intravenous. When they checked her labs this morning, her iron and hemoglobin were already improved from April- even before her infusion. So that's good news. I think her bad illness in February really affected her oral intake and also the fact that she was struggling to eat meats which are rich in iron both factored in. So hopefully after her second infusion next week, she'll be back to normal levels and won't need to even take a supplement anymore. She was so brave during her IV placement today and thankfully had no side effects from the iron. I was praying that the IV wouldn't infiltrate and that she would tolerate the iron well. Thank the Lord for a smooth appointment today. Thank you all for thinking of us and praying for Lily. God has been so faithful through all the ups and downs.
