Here is the last post of November...much to your relief! Since we found out we are staying, we are bringing Christmas to our room. Torie has also decided that she wants a potty chair...again. We got the potty and the big girl panties, and every time she goes, she gets to put an ornament on the tree. And she has been quite successful, considering the fact that she is also on diuretics!
Her labs yesterday were about the same - Albumin 2.1, Total Protein 5.1, and platelets down to 85. She had a "jelly test" - an Echo - yesterday that showed that her pericardial effusion is gone. We haven't heard what LVEF (Left Ventricular Ejection Fraction) is yet but I'm sure they'll let us know tomorrow at Clinic.
This morning I got a call at 10:40 to see if we could make it to a Nephrology (kidney) appointment at 11:00. Have you ever tried to get 2 Grandma's and a 3 year-old ready in 5 minutes? Yeah, that doesn't work. But we did make it by 11:30. The renal (still kidney!) docs feel that she is in "minimal change Nephrotic Syndrome." They are trying to avoid a kidney biopsy at this point. Not only is she imunosuppressed with low platelets, but she is also a white redhead. For those of you not "In the know", redheads bleed. Really. Ask an Labor-and-Delivery nurse (Erin!). Of course, the standard of treatment is steroids. So Torie is back on Prednisone (the steroid from hell). A 12-week course. Just like we did in May. We stocked up on spinach, asparagus, and strawberries this afternoon. Hopefully she won't pack on as many pounds as she did the last time!
Once again, I have to stop and remind myself how fortunate we are. Torie is in the best place for treatment that she could be. My Husband and my Dad are taking care of EVERYTHING at home. Lexie is working 2 jobs so that she can make a home for herself and Torie when we get back. Shaun is only a phone call away. Heather and Erin and their families are right by our sides. My Mom is my best friend and constant companion. We have all of you who read this and leave your comments to brighten our spirits. We are so blessed and grateful. Every day truly is a gift. Thanks for following us for so long and for giving us your support. You are appreciated and loved as we keep reaching for Vic-Torie!
The Christmas tree is looking very pretty Torie Keep up the good work!! You are such a big girl! Our love and prayers are to all of you. May God bless you all!
ReplyDeleteYeah, a potty chair!! Looks like you are getting alot of ornaments for your tree. Josiah just resorts to going on the floor so we have given up for right now (especially since our water is out:( Praying lots for you and your grandma's ...wish we could give you a big hug and make everything better. But if we could of done that we would of never met. We love you sweet triplet. May God bless you!
ReplyDeleteTN family
What a pretty Christmas tree! Potty training and decorating the tree as a reward-have to give your grandmas extra credit for creativity!
ReplyDeleteLots of happy thoughts and prayers coming your way.
Love & hugs,
Aunt Lettie
All the good thoughts and prayers are so appreciated. Each day I am more and more thankful for our great family and wonderful friends. To say 'thank you' does not even come closed to the depth of how greatful we are for all of you. Your support is so important to all of us.
ReplyDeleteGrand Kid Torie, keep up the good work with collecting things to put on your Christmas tree! I think you are going to need a much bigger tree before very long. Torie, you get better soon and it's time for steps forward o.k.?
As always, happy thoughts and prayers on the way. Vic-Torie! little one, Vic-Torie!
Papa Tom
Torie,
ReplyDeleteOur family is so touched by your wonderfull story of courage, love, patience, faith and hope!! We are praying for you every day and we send our happy thoughts and love. If we were closer we would give you a big hug!
With Love, The Palmers