So, yeah, I started this post Friday morning. Better late than never, right? :) Hope you all had a great weekend, it was beautiful weather here in VA all weekend long. We were able to spend quite a bit of time outside, and I am so grateful for that. It's the little things that I used to take for granted that mean so much to me now. Like just going outside. It's not just transitioning to and from the car that is difficult for Vicki, it's pretty much every transition she has. Every time she goes from laying down to sitting up, from sitting up to standing up, from standing up to sitting down..... you get the picture. Every one of those moments is difficult for Vicki. You can see her struggling. Something as seemingly simple as saying "Let's go outside" can become an hour long fight to stand up and go outside. And then another fight to stay outside for 5 minutes. Some days we just don't have it in us to pick that fight, and it's easier to not ask at all. That makes me sad. But it's the truth.
Anyway, enough of the sad talk, this weekend we had some small victories with Vicki. So I am celebrating them. Vicki likes 'campfires' because she knows that she usually gets a yummy s'more at the end of the campfire. We were doing some spring yard cleanup and built a fire to burn the thousands of sticks we had. We were able to get Vicki to pick up a few sticks, 2 different times. She struggles with it, it takes a really long time, and it's hard for her to stop and start moving at times, but she did it. The rest of the day she spent sitting by the campfire watching YouTube Tasty videos on my phone. But, she was outside. And that meant we could all be outside. And that was amazing. She enjoyed chicken and homemade sweet potato chips charred in the fire, and of course, we had a few s'mores. We improvised a bit, I had no graham crackers, so we used girl scout samoa cookies as the sandwich portion with gooey marshmallow inside. Neither Vicki nor I was upset about the change. :) Ideally, someday I would like for Vicki to be able to remain outside and be reinforced enough just with family conversations. But this weekend, it was a wonderful start. Both Mark and I got to be outside together. And that was great. And Vicki smiled a few times and got to enjoy the fresh air. And that was great. And Ally got to pick up the thousand sticks minus the 2 stacks Vicki got. And that was really great.
Ok, so back to my post that I started on Friday: Let's talk about poop. Again.
One of the things I love about Vicki's GI doctor is that he does what he says he's going to do, and always in a timely fashion. And he has a wonderful bedside manner. In this world of technology and automated information and impersonal interactions, it's so refreshing. He likes to do things himself. He always calls me directly with results. It's never his nurse or his secretary. He always returns my phone calls. And he really appreciates the pictures I take, and the charts I make for him. He's easy to talk to and he's funny. Okay, enough of me singing the GI's praises... but sometimes it's so good to say something positive about someone. I do enough of complaining, Anyway, he said some of the biopsy results should be back by Friday, and sure enough, he called Thursday night around 7:30 to discuss them.
I wish I could be as positive about the results as I am about the doctor. It sounds awful... it's not like I was hoping for Vicki to have Crohn's Disease or that they would find something blatantly wrong. But I was hoping for answers. And, unfortunately, we struck out again. Well, not totally. Kind of ruling out things is good, but there isn't a whole lot left to question... One of the things we did discover is that Vicki's reflux is getting worse. Neither of us realized that. Apparently, the juncture where the esophagus meets the stomach is showing worsening of the reflux. We are going to switch her reflux medicine and see if that will help slow down, relieve, or improve the reflux. It's hard because we don't know how Vicki feels.
The GI was a little worried that Vicki might have eosinophil esophagitis. But biopsies showed no sign of that. So that's good. And as far as the colonoscopy, so far all of the tests/biopsies have come back normal. No evidence of inflammatory bowel disease, no evidence of celiac disease, no evidence of Crohn's disease, no evidence of ulcerative colitis, no candida, no fungus, no parasites. Enzymes that break down stuff are normal. The large intestine does have an increased number of lymphocytes, but we don't know the reason. And the one test that came back high before is still pending. So, what does this tell us? Not a whole lot. Vicki is still having issues with her poop. And we still are no closer to finding out why and how to help her. She is continuing to take her lactulose for constipation. And we will wait and see how things go over the next two weeks and how that 1 test comes back. The GI said there is a possibility that the Crohn's disease is hiding out in the section of bowel that they can't reach. If he ends up looking at that, that's a whole different kind of test, and it doesn't sound great. So we will wait on that. So, for now, things are still pretty shitty. The end.
I am going to go now and post this before I get busy again. Much love to you all. xoxo
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