I haven't taken Cora back to the pulmonologist because I was so frustrated with the last appointment and I didn't want the same disappointment. I was supposed to get her back in to retake the sweat test and also do a blood test for CF, I finally did that this week and haven't heard the results yet. I did try the asthma treatments for three weeks as recommended and I saw no difference at all so I stopped giving them.
My personal theory is that Cora's rattle in her chest and upper respiratory are from aspiration. I know we've addressed her main aspiration issue due to dysphagia and I still think that part is under control. What I think she's doing is aspirating on trace or even large amounts of saliva. In fact, I'll go as far as saying that I guarantee that's what the problem is even if no doctor agrees with me. There's no test you can do to confirm or deny that she's aspirating on saliva. Her saliva just pools in her mouth and she can't control it. When she's teething (and sticking out her tongue 24/7), her rattling and respiratory starts to clear because the saliva just drips down her tongue, soaking her shirt in a matter of seconds. I know you can suction out extra saliva, give a medication that dries it up, and even have a surgery procedure to remove saliva gland(s). I don't know that any of those are a good option for her, I'm going to wait until I talk with the pulmonologist about it again but this time I'm taking Lance with me.
Last Monday we had an follow up appointment with her geneticist, Dr. Martin (who unfortunately is retiring in March and she's the only geneticist in Spokane), and everything went quite well but she does have two new concerns. She asked if anybody had taken a further look at her sacral dimple and extra folds in her bum crack, to which I replied no. I didn't think it was a concern and no doctor has ever said anything about it other than it's existence. She wanted to do an ultrasound of it to make sure the anatomy is normal and to cross out any possible abnormalities such as spina bifida or a tethered cord. I mentioned this to Ginette and she said since we're doing that we might as well get an xray of her entire spine. This week we got an ultrasound and xray done, I haven't heard the report of the xray and the ultrasound was inconclusive. Cora's bones had calcified (which is a good thing, that's what they're supposed to do) and they couldn't get a good look at the spinal cord. The next option is to do an MRI which they aren't sure if it's worth the sedation right now or not. I'm waiting to hear the final word on both of those issues.