Our trip to BOSTON children’s…..where are we now because of this trip?

We are more confused

We are more confused

More confused on which protocol is best

More confused on the status of the cecostomy

More confused on the motility test protocol

More confused on the medication options

I am just a Mom. Randy is just a dad. We are not equipped to make these decisions. I don’t know which med choices are best. I looked up the new medications advised, and both have some concerns.

Her original care team does not agree w/ the new protocol……the new care team, doesn’t agree w/ the original care team. I’m at a loss on which care team is correct. Which one do we follow?

How are us moms/dads supposed to navigate the journey of complex cases with our kids?



More confused on the status of the cecostomy

More confused on the motility test protocol

More confused on the medication options

I am just a Mom. Randy is just a dad. We are not equipped to make these decisions. I don’t know which med choices are best. I looked up the new medications advised, and both have some concerns.

Her original care team does not agree w/ the new protocol……the new care team, doesn’t agree w/ the original care team. I’m at a loss on which care team is correct. Which one do we follow?

How are us moms/dads supposed to navigate the journey of complex cases with our kids?



Her original care team does not agree w/ the new protocol……the new care team, doesn’t agree w/ the original care team. I’m at a loss on which care team is correct. Which one do we follow?

How are us moms/dads supposed to navigate the journey of complex cases with our kids?



How are us moms/dads supposed to navigate the journey of complex cases with our kids?



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