breathe…..

heading to Cincinnati!

heading to Cincinnati!


That’s what we finally feel like we can do…… breathe! Isaac had his scopes this week, he rocked them! His new colophagus has no leaks, and looks good. He swallowed the dye for the dye study (first time in his life that he drank it!) and the study also looked great!10981349_10205231525881221_8067335783227780260_n

For the first time in Isaac’s life I feel like we can all take a deep breathe and relax. We have spent the past 6 years literally waiting for the next disaster. We never had an end in sight. We finally do. For the first time in forever we won’t be watching him for signs of a hole in esophagus, and we won’t be dreading the next emergency trip across the country to a hospital.
This doesn’t mean the end for him, of course – he is Isaac 🙂 We have to return to Cincinnati for scopes for a while. He has to do a swallow study to make sure he isn’t refluxing what eats (this would present some minor issues). We are likely looking at feeding therapy once he is ready – learning to eat after 6 years will be challenge.
The team in Cincinnati wants to give Isaac 6 months to a year to heal, then they will reconstruct his airway and we’ll be on our way to losing that trach with any luck! We are finally really excited about his future!
We got his beads of courage for his last hospital stay this weekend…. we are estimating that he has at least 500 at this point, the visual of it all is pretty amazing….

Beads of courage

Beads of courage

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