After meeting up with dietician, she is thinking to let Jansen eat orally his main meal; breakfast, lunch and dinner. Previously, Jansen was only taking his lunch orally, the rest we tube-fed. Looks like the dietician has high hope that he is going to develop very fast in his eating skills considering she asks him to eat all three meals by himself. I am the one wondering whether will he has enough since he barely finishes his half bowl. Having said that, we are to tube-feed him high calorie milk in between the main meals. And also give fruits and water in between too.
Now I have to start cracking my head on what to cook daily for Jansen. Something that he can tolerate and is palatable to the adults too (or sometimes not, nah...we can't be choosy all the time 😛). Whenever I am able to, I intend to blog it here for my own reference so that I have something to look upon to remind myself that we have gone a distant in this journey - and to tell myself not to give up.
For breakfast, I usually keep it to buns or bread, with or without spread or with eggs. Milk biscuits and oats biscuits or cereal are recommended too. Or whatever that is convenient to grab in the house, but definitely junk food or snack is a "no-no".
Yesterday, we had steamed pomphret in fish sauce and stir-fry broccoli with carrot and peas, served with rice and chicken soup. I forgot to take photos since I was adjusting back to my normal self after spent 3 nights at hospital with Jansen. Good news is he ate a decent amount chicken from the soup and half bowl of everything I gave him. Yay!
Today, Jansen had scrambled eggs in the morning. So for lunch and dinner, I prepared fried rice with mixed vegetables and spinach soup in anchovy's broth with tofu. We are encouraged to give him balanced meal loaded with proper amount of carbs, protein, vegetables and fruits. Also preferably home-cooked so that lesser sodium and sugar.
And, he only ate 5 mouthfuls today before started complaining some discomfort inside. Usually we don't force a tubie like we did on normal child (opsee!). They already had alot of phobias and traumas related to mouth at hospital, so it is a bad idea to force them to eat. It will only lead to more oral aversion. I gazed at the leftover and instead of thinking he ate so little, I gave thanks for the 5 mouthfuls.
This is a journey bound to have ups and downs, and I know it ain't easy but for the upcoming prize, it is worth it. I am thankful to have a group of tubie-parents that I stumbled upon in social media. We talk to each other about our child, we rant out our pain and challenges without fearing we would be judged and we lift each other up when we go downward spiral or almost going to be crazy. And we are mature enough not to expect other people to understand us and we try to stay composed to enjoy our life, to enjoy people around us.
Thank you for reading this little tube-weaning journey at my home.
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Hope your kid quickly get used to new diet "method". Can he go BHB already? Next time uncle buy steem meal ya! Upvoted as support!
Thank you David for the support. Yes he can go BHB but only during low crowd. But haven't started eating burger. The last we brought him he didnt want to eat anything. Just want the bears.
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Mummy Jade and Jansen boy jia you! ❤
Thank you @michelleloh168 as always for dropping by with kind words. 💗
Must be a huge challenge for you. Support you in whichever way I can. Great Grace upon you @iamjadeline :)
Thank you Connie for always support and love. 😊
Itz good to see some good progress. I believe he is on the right track. Hope you continue to stay strong!
Thank you for the uplifting words and positive vibes. ✌
I guess it's really tough for all of you at the moment but I am confident that these tough times will go by quickly and soon you'll see him happily jumping around to cheer everyone up. Best of luck~
Thank you @explorernations for encouraging words and positivity. 😉
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How is Jansen? Hope he is doing much better now with strict diet and lots of rest. Do take care and God bless
Get better and better my dear boy
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