Okay. It's been awhile. Has it really been almost a month since I posted? Honestly, I haven't run out of things to say or share. I have just been busy doing LIFE lately. The new-new-NEW normal. It's an adjustment.
Brian ended up struggling again with his platelet count. Now it's stable. Not a HIGH stable, but it's stable. And that's good enough for us, I suppose.
On Monday we got the news that the genetic testing came back. Nothing prepared us for the news that it IS genetic and my kids have a 50% chance of having the same genetic mutation. What that means exactly? We don't quite know. But 50% just sounds frightening. I've had questions swimming around my head since the news, and according to Brian we'll be having a conference call with some specialists who can answer all our questions. It would've been nice to have questions answered the very next day, but I am getting used to playing the medical waiting game. Everything takes time.
For those of you that may like medical mumbo jumbo, and are research buffs and/or curious... The gene affected by the abnormality is in the C3 gene sequencing: the Exon 14 gene. Most sufferers of HUS/TTP have issues with their Adams 13 gene, but Brians case is (of course) different. Of the 6 categories under Atypical HUS, Brian's genetic mutation doesn't fit in with any of them. So the very rare disease he has is even more rare.
If that went over your head, I don't blame you!
