A Day In The Life Of A Cotton: June 2021

I can't believe it's been 2 months already since our last update! Lily and I went to Boston this past Thursday/Friday for another EGD. Her esophagus was at 10mm, and the doctor said it looked really good so he didn't even dilate this time. Yay! Her esophagitis, or irritation from reflux, is much improved as well. She still has a small hiatal hernia, but it's not something we have to worry about right now. If it gets bigger or we feel it's contributing to severe reflux in the future, she may need a procedure to fix it (Nissen). We are going to have a virtual visit in 3 months to see how she's doing and go from there. So no current plans to go back to Boston.

Lily is doing great with her glasses and the eye doctor said that they are helping with her focusing issues. She's been doing well with physical therapy as well. She's starting to cruise a little bit. Now we're working on supported walking and climbing stairs. Her oral intake is about the same, but her feeding therapist did give her the ok to start trying dissolvable foods, like rice puffs or crackers. So far she hasn't wanted to eat them very much, but it's progress! She's still not drinking hardly anything, so we are trying a few different things to get her to drink from a cup or with a straw. She still gets all her necessary nutrition through her feeding tube. We've had some ups and downs with her reflux. Her local GI doctor wanted to switch her to a toddler formula, so we got that all set up with the supply company and insurance. Unfortunately, she did NOT tolerate it. I think it was way too thick and she could not digest it fast enough because she would throw up a few times a day. So we switched her back to her infant formula while waiting for a different toddler formula to get processed with insurance/supply company (MAJOR pain in the butt). It arrived a few days ago and so far so good. We are kind of easing into it this time.

Rose turned 3 in May! Oh my goodness, where does the time go? She got a surprise visit from Uncle Jordan and Aunt Margeaux right after her birthday. We had a blast visiting with them and going to Acadia National Park. Rose got her first bike which she is loving. We are also spending a lot of time in our kiddie pool, on the play structure and at the neighborhood park. She is becoming more social and confident around other kids. She has so much fun at Sunday school and we even sing the songs at home during the week.

Cora is doing well. The twins are almost 17 months. Cora is sooooo close to walking. She loves to climb on everything and play with her sisters. They both say about 5 words.

Joe is very busy at work. He stays late every day and even worked a 24 hour shift last weekend :( Hopefully it will slow down later this summer when his first big project is done. I was able to meet a lot of our neighbors at a neighborhood get together last weekend. That was really nice and now I recognize faces when we're out walking or at the park :)

I hope you're all having a great spring and start to summer.