Since We Have Been Home...

Well like Trey we were all super excited to be back home after a long trip away. There is nothing like sleeping in your own bed. Trey felt like it was Christmas because he was rediscovering all his toys he had missed.

Behavior was quite an issue when Trey initially got home from the hospital. Rightly so and to be expected. Being in the comfort of his own home helped get things  back to normal for Mr. Trey.

Right when we got discharged from the hospital Trey was super motivated about food and drinking. He talked about food nonstop. He would tell us all the things he wanted to try. We had to explain to Trey that the surgery affects his ability to swallow the first few weeks after. There are certain foods he has to avoid that could hurt him and slow healing (ex. hard, crunchy, sharp foods for sure). Trey has done incredibly well with understanding that there are some limitations right now. He usually asks "The doctors say I can't have that because of my surgery?"

Initially I was a little overwhelmed myself because I thought oh my goodness everything Trey really loves he can't have. But it has encouraged him to try some new textures he in the past totally would refuse. So now that we are almost 6 weeks post-op he can have things with slightly harder textures. Example, soft breads, soft cooked noodles, finely ground meat, cereal that is slightly soggy, and his french fries but only the soft parts.

As we reached his caloric and volume goal for his tube feedings his appetite and drive to eat has tapered off quite a bit. But we have to beef him up right now. He has lost quite a bit of weight and is so tiny. Once we reach a safer weight gain we can back off a little bit with his tube feedings to get that appetite drive going again.

But we are super excited to report that even though Trey isn't taking in large volumes of food he definitely is wanting to experiment with a lot of foods at the present time.
Here are a few things that he is enjoying...

soft waffles with blueberry syrup
Gerber puffs
cold cereal with rice milk
strawberry smoothie
soft english muffins
sliced thing turkey lunch meat
all kinds of soft breads
any kind of potatoes
some pureed fruits
almond milk ice cream

This probably seems like a limited list to most but huge to us considering before surgery he would barely eat or drink anything.

Trey has enjoyed helping prepare some of his meals and snacks. He loves to ask tons of questions as we go. We practice smelling different ingredients or touching different textures.

The other day while we were cooking together I had Noah on my back in a carrier. Yes Noah insists he be involved in the activities too. Trey decided to carry one of his stuffed animals in his backpack that holds his tube feeding. Too cute.

Of course before surgery Curtis and I were totally apprehensive about making this choice for Trey. But we have no regrets with our decision. Trey's refluxing episodes have decreased GREATLY. It is amazing. If he does have any it is usually during a tube feeding. We can tell there is a huge difference in his comfort level. We are so excited to see with time as Trey begins to experience less discomfort how much his eating will pick up even more. The sky is the limit for this little boy. He deserves to feel safe eating and we hope he grows to enjoy it someday.