Awareness day 4/ post-op

Kai’s surgery went great. His long yellow tube is gone and a new little button is in it’s place. With just the little button left his body looks even longer and bigger! We were in and out pretty quick, home by 2:30. We spent the rest of the day snuggeling and napping on the couch! We both needed it.

Wednesday we are headed back to Boston bright and early.

Optholmology at 9 am then over to the clinic To start the next chemo cycle.

Feeding Tube Awareness day 4:

Topic – How has your attitude/family/friends’ attitudes changed towards tube feeding? What has awareness of the positive benefits done to change perceptions?

I think we were all pretty horrified at the idea of a feeding tube for Kai.
I resisted for months, but I remeber clearly the day I knew it was time.
It had been months of fighting with him through every meal. Each week we were going into the clinic and he was not gaining any weight. One weekend i just couldn’t get him to eat anything. He would no longer take a bottle and he was not nursing as much either. He was so thin and i was so frustrated fighting him for evey bite. That weekend Mark and i decided it was time.

It still felt very devistating. Feeding Kai my way was always important to me, even before all of this. I breastfed him and made all of his food myself. One of the hardest parts about the feeding tube was that i was now going to be feeding him a formula that i had no control over.

My feelings and attitude about tube feeding really changed once i learned that i could take controle over what goes in Kai’s tube.
The blenderized diet!
With the help, encouragement and experience of other moms doing this, we dove into blending.

Soon after starting a blended diet Kai started gaining weight! I finally felt like this was worth it.

Kai did not have a feeding tube because he was dying, he has his tube because it helps us keep him healthy and strong. Kai is growing bigger everyday we no longer have to torture him with getting his meds in him!
Now when I meet other families faced with the decision of a feeding tube I try to tell them the good things in our experience. It is not easy and it is not something you ever want to have to do for your child, but there are many good points to this for kids who really need it.



2 thoughts on “Awareness day 4/ post-op

  1. I am so happy to hear that Kai’s procedure went well. He is such a tough cookie. I miss seeing all of you but I think of you often. Can’t wait until our next visit. Take Care.

  2. So glad to read that Kai is out and ok. Thank you for keeping us all up to date on the latest things with him. Kai is sooo blessed to have such a strong and wise mother. Sending our Love

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