Overall, Thorren is doing pretty good. He has been able to feed himself a spoonful or two of baby food most days and he is still taking finger foods. He drinks a few drops out of an open cup sometimes too. You can’t put more than a quarter teaspoon or so in the cup because he’s still so little he tips it all the way back, and he splashes it all over himself.
So I have had to alter my perspective and come to understand that it is going to take a lot of time and therapy to get him eating and drinking again – nothing will happen overnight. Slow and steady change is what we can expect and how his goals are formed.
We are especially excited about a new plan of nutrition that involves putting yogurt, and pureed fruits and veggies through Thorren’s feeding tube to replace some of the formula. This should lead to better health overall in terms of both GI and immune system function and decrease the gagging issues, which would be supportive of an increase in oral intake.
He has been successfully converted to 75% of the toddler formula and the other is soy yogurt and thickly mixed infant formula. Then for lunch and dinner he gets the fruits and veggies added along with some extra oil to replace calorie loss to the puree. We have not had barely any weight gain since July due to illness and the really rough conversion to toddler formula – too much gagging for weeks and weeks! Then when two meals had fruits and veggies replacing some of the formula the calories were hard to get in. This is not good, but not really bad. Now that we’ve gotten that done we can start adding small amounts of oil to those feedings. We have also figured out we can’t get calories in – he starts to gag or wretch – unless his stooling schedule is literally no more than 24 hours apart. So we have prune juice to the exact milliliter and it has to go in at a certain time. We can use other things if we need it but so far that is working. Let’s just say I am becoming a far more routine individual in all this!