Today we left the house at *gasp* 6 am and drove to Alva so Belinda could do Ranger Preview, which is a thing for high school seniors to find out more about NWOSU. It was a great time and she got to talk to professors from the psychology and English departments, which is what she plans to major and minor in. She also visited with some people from clubs and took a dorm tour. I really enjoyed seeing the updates on campus and I got to see one of my favorite professors at the history booth! He told Belinda that she sure had two crazy people for parents. It is neat to go to a small school and get to be remembered like that. History wasn’t either of our majors, and I only think I had two classes with this professor, but he remembered us. It was so good to see him!
We ate lunch in the school cafeteria and then got Taco Village to take back for the fam. Belinda did not have a problem swallowing all day! She still has not had to regurgitate food since the dilation procedure. She said that yesterday, she did start to choke on rice (it’s so sticky) but she got up and started to walk and it went down. I hope and pray everything keeps going well!
And we we got home, Bennett was feeling better after Mia took care of him and everything else around here all day. That made me feel very happy.
The editor at the local newspaper wants to write a story about Belinda, and I need to get the questions answered that he emailed me. One of his questions was if we had a gofundme or how people could help. I’d never done that before, but I asked our pastor if people could give to the church for Belinda, and then the church would give it to us. We did that before for a young man in our church who needed special surgery. But then tonight, I went ahead and made the gofundme. I wasn’t sure what to put down, but I thought about how much we have spent so far, and how much that may be in the future. After she turns 18, she won’t be eligible for the same assistance from the National Organization of Rare Diseases. Her benefits are on the pediatric level. And there’s not much help for Achalasia because it’s super rare. And with health insurance kind of in flux right now, it seems smart to try to get on top of that. Also, we need to determine how we are going to meet her needs in her dorm room. We might do a wedge under the mattress to elevate her head, but many of the other parents on the facebook group have gotten adjustable beds for their kids. I feel like that might be a better option for the dorm room, so she doesn’t slide down. It would be more comfortable for studying and reading too, since she’s not supposed to fully lie down anymore.
Anyway, the gofundme is kind of experimental at this point. We’ll see what we think and make adjustments as we go.