When It Rains It Pours....

Thursday March 14, we had Anabelle's MRI and here are the results...

The covering (myelin sheath) on some of the nerves in her brain are not there.

What does that mean?
Well, much like the insulation on a wire helps it to transmit a signal, the myelin help the nerves transmit better. This is why the signal from her brain is messed up by the time it gets to the rest of her body.

 So here's what the doc said:

"If Anabelle was premature, her prematurity would answer this issue. However she was not a preemie which is why it raises more questions. At this point we are looking at two things... either a genetic disorder or an auto immune disorder. This is why I think it would be best for her to be seen by a Pediatric Neurologist at OHSU (Oregon Health & Science University). I have spoken with Dr. Wray at Doernebecher's and given Anabelle's medical history and what her scans look like it is pretty possible she has what is called Leukodystrophy; which is a genetic disorder that effects the myelin development."

Now, I warn you. We are not even 25% sure this is what it is... it's just what makes the most sense. Also, I would highly recommend not looking up Leukodystrophy because there is some really scary stuff in there and we are not quite sure that is what it is. I could give you the specifics about the disease but the big concern is that if she does have it, it is most likely progressive; meaning it will get worse with time. And it's genetic, so Ronn and I are most likely carriers.

There has been a lot more discussion about what we might be looking at between Anabelle's pediatrician and I, but to save you the details for something we don't have a diagnosis for yet, I will leave it out.

Anabelle has an appointment on Monday the 25th with the Neurologist at OHSU and we will figure out where to go from there. For now... we treat the symptoms as they show up just as they've been doing.

Thank you all soooo much for all of your prayers and support, we really appreciate it!

Let you know when I know...