(Round 2) Week 1, Day 4

Today was Sunshine's best day of eating since we've been back.  No vomiting!  Yay.  And she got a "decent" amount of both her food and her drink.  Other days one has been high while the other was lower or visa versa. Today she got a total of 28.5oz by mouth!  And since we have re-evaluated some of her calorie needs, for today all we put in her tube was an extra 2.5oz of her milk/yogurt drink (plus 5oz water).  I don't think that will be the norm yet, but we are certainly getting closer!  The flip side to this is that as the foods are denser and require her to eat less oz of them, we need to be giving her more oz of water in her tube.  So that's something we are still trying to work out and get to the right amount for her system.  I would love to see her start taking some water by mouth, but that may be asking too much of her right now.

Sunshine doing her chewing practice (kix cereal wrapped in fabric mesh) and playing with a piece of the fabric.

Praise report: We found out this week that our request for a chair like the one pictured above has been approved by Sunshine's insurance!  Wow!  We will be receiving it (in a couple large boxes) while we are here and are still trying to figure out the best way to transport them back to Mishawaka where we will be loading our truck.  Our chair is a "medium" size so at its smallest settings it will fit Sunshine now and it will be able to grow with her for years.  Many years.  And it will be blue instead of red.  We are amazed that it got approved already and we know it will be a wonderful chair for Sunshine as she continues to learn to eat!  If you are curious about more specifics, I'm sure you can google "Rifton Actvity Chair" and see what all it is capable of.

Back to Sunshine's feeding...a big part of the challenge is figuring out how to "boost" her foods so they have as much nutritional value and calories as possible (and that she can still handle).  For example, adding butter or oil to the veggies and soups and adding cream of wheat to the fruits adds lots of extra nutrients and calories to otherwise low-calorie foods.  I spent two hours this afternoon talking with the nutritionist about different options this afternoon.  My head was swimming with all the numbers and calculations.

I really hope we can keep things going (and Sunshine continues to gain weight) over the weekend so we can start strong next week and make even more progress!  This is a difficult and time-consuming endeavor.  After all, each feeding takes 30 minutes of dedicated feeding time plus 15 minutes before and 15 minutes after (give or take).  We need to do that 4 to 5 times each day.  The prep time includes making her smoothie and weighing out each portion of food for that meal.  We are also supposed to do as many of her facial stretches at each feeding as we can.  Oh, and work on chewing too.  The after-feeding time includes weighing and calculating how much she actually ate/drank for each item.  At the end of the day it also includes calculating total calories for the day and what additional tube feeding we need to add.  During the week we have a team of people to help with all those steps, but over the weekend (and when we go home) it is just us and we definitely feel the difference!

Matt gave Buttercup her first roller-skates lesson this morning and she loved it!  She's all decked out and ready to ride.

This evening, we needed to get out of the Ronald McDonald House for a break so we had supper at McAlister's and then Matt and the girls came home so he could do Sunshine's last feeding while I spent some alone time at Target.  Thank you, Matt!