Exciting Progress

When Liliana was born, it was theorized that she could be normal by the age of 3 or 4.  I can proudly say that Mercy, I and Liliana have started making real progress towards real normalcy.  We’ve had some obstacles on the way, as any young family does, but I’d like to fill you in on what we’re doing.

One of our biggest current obstacles is that we don’t really like Liliana’s daycare.  Financially, it’s wonderful and Medicare helps pay for it.  Educationally and long term, it is definitely not ideal.  The school she goes to has several other severely challenged kids, and I believe she is one of the most highest functioning kids there.  I fear that this may be stunting her social, intellectual, and physical growth.  All three of these areas require challenging interactions with other kids.  The school itself and the staff is excellent, but I’d like her to move to a school where she feels normal and can be challenged.

To get there though, there are a lot of things we need to accomplish first.  It mostly revolves around caloric intake and removing a lot of dependencies on the pump and tummy button for her maintenance.  We were discussing this last week when we had the idea to start tracking her calories each day and more precisely give a nighttime feeding.  Something similar was recommended by our nutritionist but its hard sometimes to take that first step.

Mercy developed a chart that allows us to count the calories of each meal and snack up, just a simple thing.  At the end of the day, we knew our calorie goal was 1200, so we found the gap between that and what she had eaten orally, and we filled it in.  Here’s the exciting part:  Liliana’s been eating enough to start decreasing her overnight feed volumes!

Next, we took her off of the Miralax as well.  We were using it to make excretion easier on her.  When we decreased the calorie volume of the overnight, we found we could replace that missing calorie volume with just water.  She responded fantastically!  She is hungrier the next day too.

 

In the last three days, by the end of the day, Liliana has been eating an average of 600 calories orally!

 

Keep your chins up, we can do it!

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