Well...

This poor neglected blog. It's pitiful, really. I am ashamed at how much time I have let pass since my last post. I know that I sort of left everyone hanging, which I didn't mean to do, but life continues to be a whirlwind for us without much time to compose a coherent blog post. That's why I have decided to create a Facebook Group for Camille. It will allow me to post short and quick updates about Camille to keep everyone updated. I will still update the blog when I can, though, and will post on the Facebook group when I do. If you want to join the Facebook group, search for "Praying for Camille Lynne" on Facebook and then click "Request to Join".

The biggest news we have had as of late is that all of the genetic tests they ran on Camille after her latest MRI came back normal. No really, I know this has shocked you to your core that Camille has had more normal test results, and that they still cannot find out what her underlying condition is. We met with the Cooks Genetics team again, and they continue to be stumped. Even with the latest information, which include the new MRI, and the fact that Camille has Anterior Polar Cataracts in each eye (long story that I will for sure tell one time), they still could not pinpoint which syndrome she has. After the latest round of tests--the Lysosomal Storage Disease Panel, the long chain fatty acid test, and the Congenital Rett Syndrome test--they are now down to one last thing to test for. It's a syndrome that we discovered in our own research early on, and have asked about from early on, but it is one that is more difficult to diagnose clinically, and more difficult to test for since only one lab in the country does the test. Camille has a lot of the characteristics of this syndrome, and I have thought from the very beginning that she resembled some of the kids who have it and whose pictures we have seen. However, even now that both the Cooks Genetics team and the TCH geneticist we saw in January (we consulted him after these latest findings) believe that we should test for this syndrome, and that it is the last thing that they can think of to test for right now, we have run into yet another roadblock. Supposedly private insurance does not like to pay for this test. So we are praying about possibly shelling out the money ourselves to go ahead and get it done, or waiting to see if we can find a way around that.

The other latest news is that Camille has been vomiting so much recently that she is going to have to have another scope of her stomach to try and find the source. Also, this may be too many gory details, but she has also been vomiting up old blood, which indicates that there may be some damage to her stomach lining. She will have the scope in 2 weeks up at Cooks (another long story, but we have switched back to seeing a GI doc up there). She will have to be put under general anesthesia for the procedure, which is always concerning, but she should not have to stay overnight. Please begin praying that this scope will show the cause of Camille's vomiting, and give us direction in what we should do. It is unbelievably difficult on our entire family for Camille to vomit like this. Not only is it horribly uncomfortable for her, it means that she loses calories that she so desperately needs. It also means things that may seem superficial to you, but when your child is vomiting 3-4 or sometimes more times per day, then these seemingly insignificant things become important. Things like tons of clean-up, uncontrollable amounts of laundry, and a 3-year-old little boy who has learned to make the most awful-sounding puking noises. He also uses his play cell phone to "call" our doctor, and will say something like this: "Doctor, yeah, uh, my baby sister is throwing up again. Yeah, she's puking." And did I mention that Henry wants to be a doctor for Halloween? Yes, and he wants Camille to be his patient. Hmmm, you know your little girl is throwing up too much when...

I'll update on FB and on here when I can, which is hopefully a lot more than recently! Your support is what helps us continue on, even amongst the puking and the testing and the procedures. Thank you.