So since then, I found a very small facebook group for parents of children with achalasia, and that’s helping some. It is good to feel less alone.

They put us in touch with a pediatric surgeon in Washington DC, at Children’s National, who performs more POEM procedures on children than anyone else. They also said that we should have a pediatric surgeon perform the procedure, instead of an adult GI doctor, which is what the OKC doctor is. They said a surgeon is preferred in case something goes wrong. That makes sense to me, even though going to DC doesn’t sound great.

We never got in to genetics at Children’s in OKC, but we were able to get a referral from her pediatrician to another geneticist in OKC. This is who the pediatrician wanted to send us to in the first place, but the geneticist, Dr. Polan, had left Integris. But I found out through the Ehlers-Danlos facebook group that she had started her own practice.

Belinda went to Dr. Polan on Feb. 13, way up on the north side of OKC. She checked Belinda out and said that she definitely has a connective tissue disorder, and the genetic tests should show exactly what. She got samples and sent them out. The next appointment for results is May 22. However, that’s the latest they can get back, and if they come in quicker that can be rescheduled. Dr. Polan wants her to go to a cardiologist and I don’t remember what else. I need to get with her pediatrician and get that set up.

Oh, and a few weeks ago, the genetics company called and said our portion of this was 2500 and I said, obviously, I don’t have that and then they sent me a form to fill out and then our cost is now $200. And I think that’s not cool because what if I hadn’t asked? Everything is so expensive. I think the CT Scan was 3,000? Like the Tiger King, never going to financially recover from this.

We had a video visit with Dr. Petrosyan (Dr. Kane wasn’t there but I don’t know why) from DC on February 20. Dr. Petrosyan said we should get the genetic testing back first before scheduling, because if it is Ehlers Danlos, that can create heart issues and they need to know before anesthesia. That’s scary since she’s already been under several times leading up to this.

Anyway, so now we’re waiting on genetics and I’m going to call them tomorrow and see how that’s going and if the results are back. The swallowing is getting worse. She’s barely able to get anything down now. She was able to sip down a quart of hot chicken broth throughout the day.

As much as she hated the tube, she said she might want to get it back in because she is hungry. She said maybe a g-tube, which goes directly into the stomach near the belly button, because she hated the ng tube in her nose. But then she found out it would probably leave a scar and she doesn’t want that. We need to get this taken care of quickly.

Today I asked for prayer in church and I broke down and cried and was hard to understand.

I am ready for this season to pass.