Then spoke with GI specialist about the results from Layla's PH level test. She had a probe placed through her nose and down into her stomach. For 24 hours we monitored how often she puked, coughed- showed signs of reflux, when we had her laying down, more upright etc. The doctor said that she actually showed in the near normal range for reflux. That being said, she is on multiple medications for reflux and so they are obviously working. But why is she still throwing up and gagging throughout the day? What else could be causing this if it's not reflux? Is there something we're doing wrong?
Ugh. It seems like so many of these medical tests have come back fairly normal with her. Which should be a good thing, right? But to me often, it's not. I feel like I'm just searching for something anything that can give an answer. It's been a while since we learned any new, helpful, information. Multiple specialists now have met Layla, done one or two tests and then discontinued follow up because they didn't find anything that could be explained. Every single test could come back "normal" but obviously, she is not. Anyone can see that. This anger totally stems from living in the undiagnosed world. Will someone just give me some answers and better ways to support her!? Your job as a mom is to do whatever you can to watch and help your child succeed. And I'm incapable of that. I want so badly to help her. There's still this tiny part of me that dreams there is something out there to make Layla like a typical 2 1/2 year old. Some magic pill that will cause her to be able to sit and run, talk and eat. It's a pipedream, I know. But it's there. I think it always will be. No matter how much I love her, as her.
Sort of switching subjects, we did get a call from UCLA about the undiagnosed disease program. They are finalizing the schedule for when we go down there. In the next week or two, they will get back to us with the plans and look into dates that work for everyone. My biggest fear is that we will go there and come back with nothing new. That they will say what so many others have, she is inexplainable. There's nothing to be done and they have no idea what her life may, or may not, look like. And that we will sit, in this unknown. This trip couldn't come soon enough. I need it to come before I give up. This is the last straw. If we don't learn anything new and helpful.. I'm done putting in as much effort as I have in the past 2 years. I won't be able to handle that stress anymore and I'll have to figure out a way to fully come into acceptance.
