So today was Liliana’s evaluation with Early Intervention. It was enjoyable for the most part; Liliana got to play with some toys and met some very nice ladies. I was a bit anxious about the evaluation because of the need for her to be 25% developmentally slower in any one category in order to qualify for Early Intervention services, but it so happens that if she’s been diagnosed as “failure to thrive” then she’s automatically qualified. Good thing because she wouldn’t have qualified otherwise! She had to be at or below a 12-month level in any category, and the lowest level she achieved was 13-month.

Cute teddy!

The evaluation did help me see in which areas of development Liliana needs improvement in, and the evaluators gave me helpful suggestions. For instance, Liliana’s speech and vocabulary are a little behind, so the teacher evaluator suggested giving Liliana a choice between two things. Let’s say that the two things are a book and a teddy bear…we’d have to ask Liliana, “Which do you want? The book or the teddy?” If she chose the teddy bear, we’d have to say, “Okay, you want the teddy. Here’s the teddy.” Wait for her to say the word or try to say the word for a few seconds, then hand over the object.

Another suggestion, since Liliana likes music, is to say things in a singsong manner. The teacher also suggested making sound effects so that Liliana can learn to say different sounds—so if we’re playing with a car we can say “honk honk” or if we’re playing with toy food we can make exaggerated eating noises. Liliana’s already learned some really funny drinking noises from Grandma, and the evaluators got a kick out of hearing Liliana’s sigh of satisfaction after some pretend glugging.

The teacher recommended doing some basic sign language with Liliana to help her with communication. The signs the teacher offered were eat, drink, and baby; I’m not really sure how those particular signs would help Liliana, but I guess they wouldn’t hurt.

Here are some more of their suggestions:

  • Allow Liliana to help with food preparation so that she gets involved in the process of making food and can realize the enjoyment that she and others can get out of food.
  • Allow Liliana to help feed Damien or give her a doll and bottle so she can feed her doll at the same time I’m feeding Damien.
  • Allow Liliana to play with real food so she gets accustomed to the textures. And if she puts it in her mouth, hurray!

Liliana eating chocolate-covered popcorn a few weeks ago

Apart from the suggestions that were given, a plan was written up as far as what techniques and methods should be used to reach our goals with Liliana and her feeding. I think some of the items were that we would systematically feed Liliana a variety of foods, so maybe for a few weeks we would do oatmeal in various ways (chunky, runny, with spices mixed in, etc.) and if Liliana didn’t take to that we would do some other type of food the next few weeks and see what variations worked and which didn’t.

I don’t remember what else was said about the plan—I was tired, Damien was hungry and had dirtied his diaper (oh my God, later tonight he dirtied his diaper, I was in the middle of changing it, and he dirtied the next one as I was cleaning him up! And then again!)—so I was MIA for some of the discussion on the plan.

It was really nice to have that understanding of how Liliana compares to kids her age as far as development goes. She’s at a 20-month level for her fine motor skills because she held a pen very well with a few fingers, as opposed to the fist-grip that young toddlers have. And I think she was on-point with her playing skills, as she was imaginative, mimicked very well, etc.

So pretty soon we’ll have someone come for an hour a week to help us with Liliana’s feeding. Phew!

In other news, I got a phone call today from our new medical supplier. The person I’ve been working with told me that their office in Drexel Hill takes our secondary insurance, but apparently this office (in Coatesville) doesn’t, so we’ll be getting a bill for the medical supplies we just got. It’s going to be a 10% copay, and our primary insurance limits our copay to be $1000 (yearly maybe?). Sean does have medical FSA, so we can pay for it with his pre-tax earnings…I just hope that her supplies don’t deplete the account quickly. Maybe instead of using a new feeding bag each day, I should go back to using one every 2 days like when CHOP Homecare was sending us supplies.

Okay, it’s getting really late and I have to give Liliana a compensatory feeding; with everything going on and trying to get her to eat during the day, I’m unable to fit 5 tube feedings in before 10 PM. Inevitably that means I either have to stay up and feed her, or feed her as I’m going to bed and then getting up to turn the pump off when it’s done. And then I should be pumping at least once in the middle of the night to keep my milk supply up. No wonder I’m tired throughout the day!

Just comes with the territory…