Tubie Life

The feeding rollercoaster continues.  Our local feeding therapist got the speech-language pathologist’s report from Kiran’s swallow study and was able to go through it in more detail with us on Tuesday.  We learned something new about Kiran’s anatomy.  Apparently, his epiglottis isn’t working like it is supposed to, which means it is not super successful in protecting his airway when he swallows.  He also struggles with his tongue lifting properly to get the food to where it needs to be to swallow effectively.

What this means for us right now: We can’t progress him very much further at this time.  She couldn’t really answer for us if this anatomy issue with the epiglottis is something that will get better with practice or if it will always be this way.  It depends a lot on his body and his eventual level of understanding/ability to mimic us with certain exercises to strengthen it.

I actually just emailed her to get some clarification on whether we will EVER be able to progress him much further than where he is.  This also may not be a question she is able to really answer, but I thirst for answers.

I am beginning to really feel as though I need to start seriously coming to terms with the possibility of g-tube-for-life.

We can still feed Kiran purees and crunchy/meltable foods at home as we have been.  We can still practice with nectar thick water.  She wanted us to back off on mashable food trials at home (which we were JUST starting), so she can work more in therapy with them now that she knows more about his risks.

The ups and downs can wear on a person.

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