Our other reason to celebrate today is the start of Torie's steroid wean. She has been on 15mg of prednisolone twice a day for the last 6 weeks. (Has it really been that long? I guess so.) She will now be getting 24mg once a day, every other day, for another 6 weeks. She is still eating anything and everything, but maybe she'll slow down a little bit now. Her last weight was up to 18.1 kg. She had an XRay of her belly to make sure she doesn't have more fluid or poo, but they didn't see much on it except for her great big liver. And hopefully she'll start feeling a little more like her old self. Steroids aren't pretty! A few of her favorite things to say are "NO." And "NOT." And "NO WAY." But most of the time she puts them all together, and I can't help but laugh. It goes like this..."No Mama. NO NO NOT NO WAY." I know it doesn't sound very nice, but it really is funny in her cute little voice. I think sometimes she just doesn't feel very good. Like I said, steroids aren't pretty.
She got to go home to her new house and her polka-dot room on Thursday. We had packed most of our stuff and shipped it back right before she decided to do the Hemolytic Anemia and Nephrotic Syndrome thing. So she had a ton of toys and "stuff" that she hadn't seen for more than a month. She was super happy to see her Elmo and Abby Cadabby balloons from her birthday party, and her jungle, just to name a few. She's still got boxes to open with more "stuff." She couldn't wait to play on her slide, too. And she loves being with her Mommy, Daddy, Paris, G-Dog, and Catman. It's taken awhile, but I think we're all finally settling back into some of our old routines.
Happy 4th of July to all and thank you for your continued happy thoughts and prayers, not just for us, but for all our friends that we've become so close to along our way. Torie still has hurdles, but she's made it to this milestone, and I can't wait for the next ones! Vic-Torie!
Can you believe all the support for our 150th day?!! Love the post and we miss you so very much. So glad that you are on you steroid wean!! Yeah! Can't wait to be able to play with you on our 6m.anniversary. Say Hi the the grandma's and papa Tom... also lots of hugs! Ya'll know that our door is open anytime you are traveling through TN. Love ya my bestest triplet friend!
ReplyDeleteJosiah and the gang
We're always happy to read about what you've been up to. We hope to see some photos of that polka-dot room soon. It will certainly be another day to celebrate when you are off another medicine, Torie. Keep up the good work!
ReplyDeleteAnd we'd love to meet you camping when you're ready. Fall is a great time to camp in Colorado . . . Where would be a good meeting place?
This 150 Day and 4th of July celebration was extra nice because you are all home! Torie and Josiah have come a long way. We all have in one way or another.
ReplyDeleteWell grand Kid Torie, you got lots of unpackin' to do. I'm glad you are starting to got off those steroids. They are yuk!
Keep engraftments up! Need 100%. Vic-Torie!
Papa Tom