But it turned out that they did even better being away from home and they did not need to be tube fed at all that weekend and for the next three weeks! Maybe it was the change of scenery, being around their cousins, getting some extra encouragement, or just that they were ready. Whatever it was, it was very exciting and a huge turning point for both of them.
We have only had to give them a few ounces of formula by tube once since then, just a couple days ago. They weren't drinking as much and I have been worried about their weight, James' weight has been stable but Sam is still losing a little bit. I had been adding a little bit of cream to their drinks for about a week and it was fine at first but started to upset their stomachs and so they just didn't drink as much for a couple days. I stopped adding the cream though, and they are both picking back up on their volume intake.
They are still on liquid, Pediasure and Carnation instant breakfast, but they are starting to seem interested in more foods. They like yogurt, just a few bites at a time though, and we have been trying some different smoothie flavors. They also like to taste pickles, chips, and other salty things but just lick them, no chewing yet. I thought they would be sick of chocolate milk by now, but they still love it and ask for it all the time. Sam and James have made, and are continuing to make, some amazing progress and we are so happy with how great they are doing!
Good work! Love hearing about their progress!
ReplyDeleteHi there - how are your boys doing? We are considering the Spectrum Pediatrics program too for our little one and would love to hear your thoughts on the program and how it has worked out for the long run. Warm thoughts to you all!
ReplyDeleteHi, my boys are doing great, they had their tubes removed about 3 months after going through the program. They are on a liquid diet, and currently working with a speech therapist to move toward solids. It is taking a lot longer to have them eating real food than I want it to, but it is so nice to not have to deal with feeding tubes anymore. We love spectrum, they were very caring and easy to work with. The only issue we had was finding a way to pay for it, as it is pretty expensive. But between insurance and donations we were eventually able to get the money we needed. It is a long journey, but it has been worth it. My boys have made a lot of progress this past year, and we are very grateful for the help that spectrum pediatrics provided. Hope this helps. Good luck with your little one, and let me know if you have any questions!
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