5 months, 2 weeks, 1 day since diagnosis
59 days away from home
We are half way to day 100. We're 1/4 the way to day 200. We're 1/8 the way to being free.
Things are good. We've settled into the Ronald McDonald House and Riker seems to be back to her normal self. Having the entire family together was wonderful and I can't wait to have them back down next week for Thanksgiving.
We went back to 6 West for a blood-tube and level test today. Riker's sodium levels are good, her cyclosporin levels are good and they adjusted up her magnesium by a small amount. We're good :) Our next visit to clinic will be in two days on Tuesday.
Riker's still not eating - all her feeds are through her g-tube and they're going very well. I have been trying to offer her food right before and during her g-tube feed, though. I figure, we don't need to put her back on the bottle since she's already 9 months old. She's not interested in having me feed her at all but she's getting a little bit better at trying to feed herself.
Well, today, we had a HUGE milestone. Apparently, she knows what to do with her sippy cup! She didn't drink much of the water out of it but just lifting it up is a very big deal. She's not eaten in months and only rarely seen a sippy cup. I am thrilled.
I hope I will only have happy updates to share going forward. I am sure that there will still be bumps in the road but I am hopeful that we are now on the road to better days.
You don't know me but I learned of Riker through a friend and have been following your blog. I am thrilled that she is doing so well. I hope she continues to get better and that you and your family will be able to move home again real soon!
ReplyDeleteHello Tory,
ReplyDeleteI'm following you every day;
Hey, fill that sippy cup with a 'loaded' milk shake..... maybe soon you'll be able to do this and that may be the beginning of better feeds;
Have a GREAT THANKSGIVING;
Lots of Love and Prayers and HUGS too.
Gloria