Its been a year, since we started all this craziness, not the actual ITP adventure, thats been ongoing for 8+ years, but the Evans Syndrome Saga. This was my post on Facebook exactly a year ago:
Scariest day of my life, finding him like that. Images embedded into my brain for the rest of my life of coming so close to losing him. I only hope and pray to never go through that again.
Anyway, not to dwell....
As I said in the last post, everything went well in Chapel Hill, also we did December's IVIG last week here in town, since Jordan is without insurance until January 1st (thats a whole other story @@)
His platelet count had dipped a little, not by much (went from 222 to 202), but as a parent with a child with his disease, any drop is never a good thing, and puts you on high alert. So I am that hovering parent this month, double checking for bruises and any petechia, ugh, I hate being this way.
I am unsure on when we will have our next blood draw, we did decrease on steroids two weeks ago, not by much, went from 16ml twice a day to 13ml twice a day and everything looked good on last week's blood draw. I am going to assume Dr. Gold will want blood work done before Christmas, which is three weeks away (crazy), but we will see. I cannot wait to get him off all this medication. Once we are completely off the steroids, I will ask about when we will be weaning off the CellCept. I'd like 2015 to be a good year for him and us as a family, but once again, this disease, we can have some good days, but a lot more bad days, so we tend to live in the moment and not the future.
I have a meeting next week for disability for Jordan, please keep your thoughts and prayers with us on that aspect. I dont care about the check every month, but the insurance aspect of it, would greatly help! Fingers crossed!
I will update whenever I have something to update I guess. I hope everyone has a Merry Christmas, and Happy Platelets!
Continued thoughts and prayers as always! <3
