Keep Riley in your prayers, as he continues to show us that miracles are possible !! Have a great turkey day, and don’t forget to count your blessings !! bruce
Riley’s appointment with lung transplant .. Dr Goldfarb went well. Even though he has a little cough his lungs sound ok. Labs all seem to be in Riley’s range.
The only hiccup was that Riley has lost about 8 lbs over the last 6 months or so. May not seem like much but when you were only 65 lbs to begin with its a pretty big drop. We know why. Riley has been trying to transition to oral feeding versus g tube feeds. He was down to only 2 night feeds a week running at half strength. Hope being after this appt he could have cut back more. Unfortunately that will not be the case. Riley will continue with 2 feeds a week with a higher strength. Needless to say Riley is not happy but understands why. We did speak to nutrition and she gave us a bunch of samples…
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