Week 2, Day 2

So, we talked with the dietitian at the clinic today and she wants us to start making changes to the actual blend we are making for Sunshines tube feedings.  Currently, her blend consists of: Pediasure, Baby food fruits/veggies, Baby food sweet potato, Baby food meat, Infant oatmeal, olive oil, sugar, kefir, 1/4 avocado and water.  Looking at how much Sunshine has been able to take by mouth, she wants us to take the Pediasure and all baby food (except the meat) out of the blend!  We thought, what does that leave us with?  Hah.  We may have to add a little water to make it thin enough to go through her tube, but our quantitiy of blend is going to be significantly less!  The current blend makes about 29oz, but we'll be taking out about 20 oz of that!  Wow.  Again, I would call this tangible progress!

This morning, Sunshine did great.  They gave her fruit cocktail blend (introduced yesterday afternoon) and newly introduced sweet potato.  She ate both with no problems.  She's also drinking more, occasionally sucking on the straw herself.  They've started giving her more bites/drinks between each "TV watching reward" and that means she's processing the food better/faster and getting more used to the expectations.  It also means more time of her 25 minute session is spent eating and less is spent watching her TV show.

They also had her try chewing this morning.  We are told that is a skill that takes longer to develop.  They put a small piece of nutrigrain bar in some cloth mesh and had her chew on it.  Then they could see how well she'd chewed up the piece.  They were complete mush everytime she did it and they said she did really well with it.

Chewing practice

I am so proud of my girl I feel like telling everyone how well she's doing.

"Smile!"
Morning selfie.  Not sure why she looks so yellow though.  Funny light, I guess.

This morning she has had a total of 6oz of food and 3.5oz of Pediasure.  What a good start!  She could be gearing up to beat yesterday's record.  We'll see.

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Sunshine's afternoon went great also.  In her 3rd session she drank 2.3oz of Pediasure and ate 3.4oz of Yams and Applesauce.  At her 4th session she drank 2.2 oz of Pediasure and ate 1.9oz of Peaches and Carrots (newly introduced).  The 4th session was intentionally smaller amounts because it was "snack time" instead of a "meal time".

After consulting with the dietitian about her oral intake and considering what we'd already given her via tube throughout the day (16oz) she said she'd gotten enough calories for the day and we didn't have to give her anything additional later in the evening.  It sounds strange to say we let her "skip supper" but when you've been eating all day, it isn't that big a deal.  (And she suggested that she may do really well in the morning because she'll feel hungry.)  So today, she got a total of 8oz of Pediasure and 11.4oz of food, and we eliminated 13oz of her tube feedings.

So we did a Target run and decided to go out for supper ourselves.   It was a nice break to be out of the Ronald McDonald House and clinic for a while.