This is a blog about my family; Michele (I'm the mom), Dad Josh, big sister Zoey Lynn and our new addition Riley Rose. Riley was born with 22q11 Deletion Syndrome aka DiGeorge's Syndrome which we are finding to be a daily challenge
Wednesday, June 22, 2011
Swallow Study
Well Riley had her swallow study and we had a good news, bad news kind of situation. Good news is that she is progressing and that the therapist also agrees that Riley will eventually get rid of the g-tube. Bad news is that it is probably going to take a little longer than Josh & I were hoping for. I know Josh was hoping that she'd be tube-free before starting in day care in October, but we just have to roll with it. We will continue feeding Riley the baby food, but we have to take longer between bites ... even if she opens up and wants another bite right away (which is a common occurrence) since it takes her 2-3 swallows to get her food down her throat properly. We're only going to offer her water from the cup, no more juice in case she does aspirate it into her lungs. Also, not at the same time that she is eating to help avoid the aspiration as well. It could be that he system still needs to adjust, but we just need to keep putting one foot in front of the other. Riley is doing so amazingly well in everything that we just need to count our blessings, not our setbacks.
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