Boston Follow Up and Iron Deficiency

 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. 

First Stuckie and Other Updates

 It's been a wild start to 2024. We've had 4 ER trips, a hospitalization, and Lily's first stuckie. In January Rose had a concussion after falling from her bunkbed. Thankfully she recovered from that quickly and it was just more scary than anything. In February, Lily got a bad stomach bug and was severedly dehydrated. She spent about 5 days in the hospital for IV fluids and rest. Then in March, we were eating breakfast for dinner one night. Lily swallowed a piece of breakfast sausage without chewing it at all. We could tell something was stuck because she was trying to bring it up. She could keep fluids down, but not solids so we knew something was wrong. The next morning she still couldn't keep solids down, so I brought her to the ER at Children's hospital in Milwaukee. They did a special xray called an esophagram that showed there was something stuck in her esophagus near the anastamosis site. So they did an EGD that night and removed the sausage. I sent the images from her EGD to her team in Boston. They called to talk about it and said they could see significant scar tissue has formed around her anastamosis again. They said she needs incision therapy and a dilation. The incision therapy is when they make small, precise cuts in the scar tissue to help break it up and allow her esophagus to stretch when they dilate it. 

So we are headed to Boston on Monday morning. Her procedure is on Tuesday afternoon and then she will have appointments on Wednesday morning before we fly home later that day. I just wanted to give an update and ask for your prayers. We don't know what this means with her scar tissue reforming. I'll find out more when I talk to the doctor I'm sure. But I'm a little worried about what it might mean. Hopefully we won't be heading back there again too many more times this year. She's been a trooper through it all. She's suppose to only eat soft foods right now to avoid another stuckie. She's done a good job with that mostly. She really misses cheetos though. 

Prior to these recent issues, she had been doing really well since our last visit to Boston last June. Her reflux is much better overall, she had very few illnesses (maybe thanks to the vest?), and she's been growing and developing like she should. She and Cora started gymnastics a couple months ago and they're both very excited to start 4K in the fall. I talked to her teacher about making an Individualized Health Plan for Lily at school. I'm hopeful that she won't have too many issues at school with reflux or swallowing issues. 

I'll send another update next week after her procedure and appointments. 

Love,

Heidi

Sweet girl

Cora checking out the eclipse

Sisters

I can't believe Rose is almost done with kindergarten! She's learned so much.

Children's Hospital for stuckie

Special tea party at school