Day 5/ chemo

Opthomology went well. They said his vission is still stable, ‘no significant chamge’ my favorite statement….For one of the tests they cover one eye at a time to see how each eye does on it’s own. Kai was definatly very upset when his left eye was covered. We already know his right eye has less vission, but it really seems like his vission on the right is worse than i had thought in the past. They maintain that there is no change, so maybe he was just sick of it today!

Chemo went well. Again we talked a lot about Kai’s low energy and lack for progress developmentally. We decided to have another meeting with neurology and to meet with physical therapy at Children’s for an assesment.

Kai was very very tired today. We Spent most of the day snuggeling on the couch. I am afriad getting anesthesia one day then chemo the next was really too much for him…. Hopefully tomorrow will be better.

Topic – The need for greater awareness in the medical community – Explain a situation where a clinician didn’t understand tube feeding and what was the impact.
We have way more trouble with clinicians not understanding, or being afraid of, Kai’s port than his tube!
What did surprise me was the lack of knowledge amongts our clinicians about feeding Kai anything other than formula through his tube!
I would like to see greater awarness of using a blended real food diet in feeding tubes. I would like tube fed people to be made aware of that option and have education and support from our clinicains on how to do it safely and effectivly.
Kai did not start gaining weight untill we strted feeding him real food in his tube. I know it is not the right option for everyone, but it should be AN option supported by nutrition and dietitions.

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