Well, we had our latest appointment with Dr. Sherrod, our GI, whom I just adore. Riley is doing awesome ... but the greatest thing is that Dr. Sherrod told us is that Riley will get off the g-tube, it's just a matter of when. I have to admit that I totally teared up, but they were good tears. It's just a great thing to hear that it will happen, not that it's only a possibility. Unfortunately there are kids out there who don't have that possibility.
We are currently working on weaning Riley off of her continuous night feeds. Every 3 days increase her daily bolus feeds by 10 ml (each feed). We know that Riley required 835 ml in a 24-hour period to maintain her caloric intake, so whatever is leftover she gets on her continuous feed. The first day we increased her, Riey spit up after her first couple of feedings. It seems like it will take her little system a little while to adjust to the changes. This is a good thing though, for as Riley becomes more mobile, there are more and more times she wakes up tangled up in her cords, or we find her yanking on it, or even chewing on it. This is a big step in getting up to our ultimate feeding goal.
We continue to introduce a sippy cup, and even a regular cup for drinking purposes. Dr. Sherrod said we will get to the point where we try out giving Riley 1 oz of her feeds orally and see how she does with that. Some kids take to it right away, and just want to gobble it up. Other kids take a little longer to adjust. Plus there are the times that the kids who love it take a slide backwards. We do know that even when we get to the point where Riley is taking 100% of her feeds orally, it will still be a few months after that before we remove the Mic-Key. It's very easy to take out and close up, but it's much more difficult to put back in - Lord knows I do not need my little girl having any more surgeries.
I am hopeful and that is a good thing.
No comments:
Post a Comment