Mar 17 - Still tube free with a limited diet

Mar 17th - Kyle is still tube free but getting 99% of his nutrition from high calorie fortified milk. However, his feedings have been going up and down. He was drinking milk very well but wasn't interested in soup anymore. But the volume was so high that he gained 1 lb 4 oz in one week! But then he had another minor cold and had a runny nose with a lot of mucus for two weeks. He was still drinking a ton of milk even though he was sick. And that coupled with the excessive drainage from his illness made him vomit. Since he was still learning to figure out this "self-regulation" thing he had days where he was taking upwards of 28 oz again. There was one day he took over 33 oz and topped 1400 in calories. But of course he vomited four times that day. Then a few days later his volume started to go down and then we were stuck in a rut of super low consumption for a week. He was still able to keep himself hydrated so we did not feel that we needed to put the tube back in.

We are now separating milk times from solid times. Milk offerings are now done in the kitchen with us holding him upright, while solids are done at separate times at the dinner table. We came up with this idea because the last time he started rejecting milk was due to being distracted by all the fancy new solids and he was ignoring milk and just wanted to eat the "big people food", even though all he did was chewing on them but not really swallowing them (at least not for the majority of them). When kids are first introduced to solids it's done separate from their regular bottles so I thought the separation would be a good idea.

Kyle saw the geneticist this week for his annual follow up. The doctor said he looked good and appeared to have grown a lot in height in the last couple of months but his weight has stalled/decreased/but is coming back up. Since there are no genetic issues with Kyle he has been released with no additional genetic appointments in the future.

Of all the issues Kyle has, feeding is by far the hardest. I can pretend that the other issues don't exist for a day, a week, or even a whole month, but feedings are there haunting us multiple times a day, every single day. There is no escaping from it. Although the experiences aren't exactly the same, this article offers a great insight and perspectives on the daily struggles that we face as parents with a special needs child with feeding issues. It's a really good read for anyone who's interested.
https://www.nytimes.com/2016/02/07/magazine/when-your-baby-wont-eat.html?_r=0

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Kyle the big boy!

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Won't let go of the biscuit in his mouth

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Happy St. Patrick's Day