Liliana in 2015

Hello! It’s been a long time.

Liliana is now 5 years old, and her younger brother is 4. She is now 41.5 inches tall and hovering around 35 pounds. She still has a G-tube, although we’ve recently started trying fewer calories from the pump in favor of drinking a heavy calorie Pediasure.

She tries to eat as little as possible, unless it’s one of her favorite foods (low calorie snacks like popcorn and cheese curls). While she can eat 2 scrambled eggs for breakfast like she did today, other days she will eat only one egg.

While we were visiting my family, it seemed like Liliana ate a lot. She loved roast duck, especially the delicious fatty skin, and one of her absolute favorites is Chinese roasted pork. It makes me feel like I should cook Chinese food more often.

So it’s obvious that we are still struggling with Liliana to get her to eat enough. We want Liliana to have her tube out before she starts school in the fall, so I can imagine that she would likely need to be over 40 pounds. When she’s been 35 pounds for the last 6 months at least, it sounds very difficult.

Liliana is a happy girl, though. Today, she made a very large book by putting 2 pages of blank paper next to each other and then taping them together to make a large page…she made several of these large pages and just stacked them on top of each other. She was using her crayons to write and draw in the book. When it was time to clean up, she just folded the book over with the taped part at the “bound” area and put it away.

She loves to sing songs from Frozen. She also likes to draw ghosts and say that she’s going to have 4 babies when she grows up (3 girls and 1 boy she says). She also wants to be a nurse.

It’s definitely tough…she needs a lot of time to eat to sustain herself but she also needs time to develop as a person. I feel like all of the pressure we put on Liliana about food is going to give her anxiety about eating, but I also want her to grow and thrive so she can be the woman she dreams herself becoming.

0 Comments

Leave a Comment

*