My facebook post from November 3, 2023:

And then this facebook post, from December 6:

So that was a major disappointment. I really felt like this was the test that was going to help us, and they didn’t even know when it would be done. I wasn’t sure if I should take her to another location, or wait, or what. Not knowing what to do is such a huge part of all of this.

But then, on January 12:

We ended up spending the night at a hotel across the street, since the weather was so bad and I did NOT want to take a chance on missing the appointment. From my journal on January 14:

Belinda and I are in a hotel now, at Embassy Suites in downtown Oklahoma City. I feel a little silly about it because we came to be safe from the terrible winter storm that was supposed to happen, since she has a procedure at Children’s in the morning, but the storm wasn’t much after all. However, I did see several stalled cars and one that had slid off the road, so maybe it was the right thing after all.

The next day we were at the hospital bright and early! But boy, Belinda had a HARD time with this procedure. She thought she would be asleep again through it, but she had to be awake for it. She cried a lot but she had to do it. It was like having the ng tube put in, sort of, which she hated. They put a little numbing stuff in, and then they put a tube in her nose and down her throat to her stomach. Then she had to drink little sips and big gulps while the tube tested the pressure. Dr. Altaf was surprised and told us so. With her other tests, things looked normal. But this was not normal.

Belinda also had to regurgitate right after the test, because she had to swallow a big gulp of water and it got stuck. They didn’t have a vomit bag in there! I quickly dumped out the cup in the sink and she used that. You’d think they would have been prepared for that to happen. I guess achalasia is very rare though.

My journal on January 16:

Yesterday the motility test showed that Belinda’s esophagus is very abnormal. Dr. Altoff’s prelimiary diagnosis is Achalasia type 2. She has another barium swallow study on Thursday now, and we’re trying to get her genetic testing pushed forward, to check the Ehlers Danlos possiblity before any surgery. She had a hard time of it but she did a great job. Then that night she tried to do a somersalt over my footboard to be fun and lighthearted and it was already broken and it completely broke and she fell. And then she cried and cried. I know it was good for her to get it out but poor baby.

My next facebook post was Jan. 30. This was a hard day.

Facebook post from Feb. 7:

The new doctor, Dr. Rumman, told us that Belinda would be a fine candidate for the POEM procedure, which is good news.

Facebook post from February 9:

They also said she might need antibiotics for her left lung, and she was coughing a bit, but her pediatrician said we would wait and see how it goes. And it went fine.

Continued in Part 4