I did it again!! Sorry, we actually got discharged from the Hospital on Sunday. We're now staying at the Ronald Mc Donald house nearby. It was really hard the first day and night. I cried a lot. I've been on my own trying to remember her med schedule, IV schedule, feedings, etc. Plus, we had basically just bagged everything at the hospital to bring over and I was trying to make sense of everything and balance her stuff. Pretty crazy. But, the second day was better, once I got a routine going everything has been a lot smoother. We now have to go to clinic visits twice a week...which is actually deceiving because she still has to go in randomly for blood draws and whatever else they want me to do. For example, we spent 8 hours at the clinic today for her IVIG infusion which she will get once week. It takes about 5 hours. We had some good napping today! Altogether though, I love being out of the hospital. It is so nice to be able to eat decent foor again. I've been watching the food network for the last five months...Ramen just doesn't cut it anymore. Scarlet is doing really well. She had some signs of the GVHD and it has pretty much cleared up. They are talking tube feedings again, I'm still fighting it really trying to get Scarlet to eat more. She did really good today, hopefully she'll keep it up.
By the way...sorry about the sideways pic... : )
2 comments:
Yay!!!! That's great Kati!! I'm excited for you guys that you have made it this far and are on your next step. I'm so glad to hear that Scarlet is doing so well. I don't know how you do it, you are a super mom.
She is so sweet! I'm glad you've made it out of the hospital. Hooray for you guys!!! I hope all continues to go well.
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