After days of research and speaking to friends, family, and professionals the past couple of days, our, well, only option, seems to be sinking in. Our array of therapists have been a great support in encouraging us that this doesn't have to be permanent, that he does need this to gain weight (because we've been stalled for a few months now), and it will just improve his overall quality of life.
It will look something like this.
Our nutritionist thinks that since he can handle large oral bolus feeds, 8oz pediasure bottles, that we should be able to completely forgo a feeding pump and just do gravity fed bolus feeds with a syringe. This means he will not be a slave to the pump, won't constantly have a long tube from his belly to the pump that could be a major cause for accidents.
Plus you can decorate and accesorize! We can make this fun for Gav as well as for the other boys. They make "belly button" covers, which not only decorate but also have added medical benefits which absorb, reduce friction, and protect.
They also make binding bands with turtle shell openings to have access that provide added protection and stability
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It's also starting to sink in that the button won't limit his life anymore than his Cerebral Palsy already does. I think it's just going to take a little time to adjust and learn, and for Gavin to heal.
We have our surgical consult on Tuesday morning so I will be sure to update after!
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