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| January 24, 2010 |
Tuesday we saw Dr. Chavers and started Torie's steroid wean. She'll go down by 5mg once a week. Today was her first dose of 25mg, so the countdown is on. It'll take about 5 weeks for her to be completely done. Hopefully this will give her a longer remission period from the Nephrotic Syndrome then the last time did. We saw Deanna, our favorite NP, at Clinic today. It's so hard to make a plan when we're not sure what will happen next. So we're not making one. We'll watch labs for a couple of weeks, and see how they are with this wean. The biggest concern is Hemolytic Anemia. Her RBC's were down just a little on Monday, and so was hemoglobin, but that could've been just the day of the week. We have an appointment with Dr. Orchard on the 7th, and if things are stable then, we will leave later that week. Cross fingers, toes, eyes, and everything else!
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| January 28, 2010 |
Torie was admitted to the hospital on January 25th last year to start all of this. We were able to come back to the House for dinner that night and they served spaghetti and meatballs. Torie's favorite! Tuesday night, the 25th, dinner was spaghetti and meatballs. I wonder if they have 365 nights of menus? Our friend Zachary was admitted Tuesday, and his transplant is set for the 4th. He is on his second day of chemo, just like Torie was on this day last year. It seems like it should feel so long ago, but it really doesn't. After everything, this last year has gone faster than I imagined it would. Especially if they had told me we'd still be here!
STEROID WEAN SOUNDS WONDERFUL...KEEP UP THE GOOD JOB, PRINCESS TORIE.... LAST YEAR WAS A WILD ROLLER COASTER RIDE, IN MINNESOTA & EVERYWHERE...SOMETIMES WHEN I THINK OF ALL THAT HAPPENED I'M EXHAUSTED...I'M REALLY GLAD THAT IT HAS SMOOTHED OUT..AT LEAST FOR NOW...POSITIVE & WARM THOUGHTS YOUR WAY KATI
ReplyDeleteWow what a difference a year makes. I am so excited for you that it is almost her first un-birthday. I hope the wean will keep her nephrotic syndrome in remission. I pray that you get to go home soon!
ReplyDeleteWE MISS YOU
ALL OUR LOVE
Kim and Joseph
Dear Torie...I love Love LOVE! hearing you sing your "A-B-C's" Keep singing and smiling your beautiful smile. Give your Mama and Mama-grand a big hug for me. We miss all of you. I'm glad to hear that very soon you will be able to come back to Colorado. Stay strong!
ReplyDeleteDonna, Ken, Kevin,and Baca
Wow-what a journey. You have come so far and you have been quite the trooper through it all (as have the grands).
ReplyDeleteHope everything goes well so you can come home. Can I start counting sleeps?
Love to you all!
Aunt Lettie
Oh wow, I really hope the time is right for all of you to come home! We have had sunny and warmer days lately and I'm getting the freezer loaded with corn fed Fruita beef (thanks Ken)! Sometimes it seem like you have been gone forever and other times it hard to beleive you all started your Minnesota journey over a year ago. Good and happy thoughts that all of you will be on your way home soon.
ReplyDeleteTorie, you keep doing good and maybe you can be home for Valentine Day. That would be the very best Valentine ever! You are a sweet Vic-Torie!
Papa Tom
Incredible to see a picture of one year ago... the progress has been great. Torie looks great! Especially her abundant red locks of hair :) Love them. I am keeping everything crossed that Torie can come home soon (along with Kathy and Cheryl)! Wishing for the best!
ReplyDeleteStacey
P.S. Gonna have to check out Fruita Rec center pool with me Torie...... :) :) :)