Enjoying the Summer and Food!

Posted on June 21, 2014 by William 4 Comments

DSC03374Today Evan is 2 years and 11 months old! I cannot believe how quickly the time has gone by. I miss baby Evan cuddles and all of the “firsts” but big boy Evan is so much fun.

In my last post I mentioned that the dietitian suggested that we stop his 2 daytime tube feedings and continue the 2 nighttime tube feedings. His eating has improved significantly since then…with a caveat. He eats/drinks much more for my dad and the occupational therapist than he does for Sarah and I. We record what he eats and drinks each day and are amazed at what my dad is able to get him to put down. Sarah and I are lucky to get half to 3/4 of the amount that papa does. We have been keeping tabs on his weight and he seems to be holding pretty steady. Not losing anything, but also not really gaining anything either. We would like to get him a little heavier, he seems much to skinny to us. I don’t bother trying to give him “healthy” things so long as he’s getting the right mix of vegetables, fruit, grains, and protein… bacon, peanut butter, ice cream, and chicken nuggets are all fair game. We’re not “there” yet, we still deal with puking pretty regularly and he isn’t taking enough volume that we can stop his night time feeds but we’re so much closer than we were 6 months ago.

His next surgery is still scheduled for September 11. There haven’t been any changes to that. We will just keep him healthy and nervously count the days (82).

He ate his first full scoop of ice cream this month. When shown all the flavors and asked what kind he wanted, he responded, “brown.” Love that boy! 🙂

Enjoy some pictures from the last month or so.