Rylie has been eating all on her own with no help from the nose tube for at least a month now. She is still not drinking at all, so we still use the tube for hydration. The foods Rylie does eat are mostly watered down, so we feel like Rylie is getting a lot of water through her baby cereal (at least 4 oz. per bowl!) and applesauce (one serving is 3 oz. of fluid). So we're not making Rylie wear her tube all the time. We're alternating 3 days with the tube and 4 days without the tube. It seems to be working, because Rylie's diapers are staying wet and not too concentrated. I dreamed last night that Rylie started to drink rice milk again. It's funny because it really is my dream for her right now. However, I'm just so thankful that Rylie is eating and feeling good.
Lyle and I seriously considered a G-tube for Rylie. A G-tube is a little button inserted into the tummy instead of the tube in the nose. After talking to specialists and other parents with children with G-tubes, we're glad we have opted out of that. It is an invasive procedure that would probably only prolong teaching Rylie to drink on her own again. I now truly understand the need for such things, but we're lucky that Rylie is making strides to eat on her own even if she's not always good at trying new things.
We are SO GRATEFUL for where Rylie is right now. That we're home and healthy amazes us every day.
3 comments:
Hi. It's good to read your blog today. We have been reflecting back on everything that has happened in the past year -- all the learning and choices you've faced. You've done a wonderful job making informed, wise decisions along the way and, as they say, "so far so good"! We sense progress with the alternating days on/off NG tube. Soon that dream will come true. Hang in there! We'll be seeing you. Gobble, gobble! love and prayers, L&B
Hey guys, I hope all is well and very excied about Rylie's engraftment.
Have you noticed that kids who go to other hospitals for transplant seem to be eating a month after transplant (or less)? Here we are at 6 months out and just getting back into the eating groove. I wonder why... They don't seem as healthy or successful otherwise, but they eat. Anyway, just an observation. Take care!!
Uncle Mack
We hope she eats lots of sweet potatoes at Thanksgiving! Keep the good reports coming...we love you all Gary and Deb
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