Today we prayed for Belinda at church. After that, she was drinking a clear Ensure drink I got for her, in the hopes she could swallow it since it wasn’t thick at all, but the sugar started making everything stick and she had to go the restroom to get it out. She and I went to the kitchen after that and she tried to get more out there and take tiny sips of water. We ended up in the privacy of the children’s church office where she cried a lot. It’s just so much for her to take on. After some time in there, I coaxed her back to the church service. We stopped at the refreshment table and I got a coffee cup full of warm water for her to sip on, and that seemed to help clean things out. I really regret buying those drinks. It seemed like such a good idea, but it was not.

We had communion after that and I wondered if she would be able to handle the tiny wafer and cup of juice. Afterward she told me it was stuck in her throat, but it was small so it was bearable.

We had a church lunch and she ate all right but ended up needing to use one of her little bags to regurgitate in after. I hope she got some of it down.

The afternoon and evening was hard too. I had her try to drink a Complete nutrition drink and she couldn’t get it down. It was from the refrigerator, so room temperature will be the next thing we try.

She was able to drink about 15 ounces of chicken broth. Warm liquids seem to open things up better for her. But I don’t think she can subside on broth. She says that she is starting to feel really tired all the time, and she can’t think properly. She’s scared that if this isn’t figured out by this summer, she won’t be able to hack it in the Harvard summer school program she got into.

I told her I would call Children’s tomorrow about getting an ng tube in again. She’s worried that it will be a problem with dance. Her final two dance competitions are the second and third weekends of April. I think maybe she could get the tube in now, then take it out before the first dance weekend. She can’t do several of her dance tricks with an ng tube in. It’s expensive to get one put in but I am at a loss on what would work better.

I also did research tonight on what other parents with kids with achalasia are feeding their children. I have looked before but didn’t stress on it since she was doing okay. Tomorrow we have co-op and I’m going to bring broth and soup and a room temperature Complete drink and hope for the best. Maybe tomorrow will be a good day again and she’ll be able to eat nachos in the lunchroom. I hope so.

I also emailed my contact at Children’s National and updated her on what’s going on, to see if there’s anything we can do. Maybe we should just move ahead with the surgery without the results of the genetic testing. Hopefully I will hear back from her in the morning.