Day 2 - Slow Progress

It has been a rather rough start for us at the feeding program. I have been feeling sick the past few days with a sore throat, sneezing, and congestion. Selena also wasn't feeling well and had a massive headache.  It was almost to the point where she needed me to take her to the hospital. But we managed to stay afloat.

The therapists gave us specific instructions for the night of Day 1.  I fed Joy through the pump (5oz formula and 3oz of water) at 9pm and around 11:30pm, I made an attempt to remove the NG tube while Joy was asleep. Not easy by any means because pulling the tube could irritate Joy and cause her to wake up and cry.  Unfortunately Joy felt the tube being pulled out but thankfully she fell back asleep.

The next morning, it was a bit strange to get her from the crib.  I can't remember the last time when I've seen her face without the multiple layers of tape.  Joy gave me a smile and was quite playful.

Morning Play Time 

Somehow she knows she's being bad

At breakfast, Joy did ok. She drank some formula and she had pureed bananas.  She didn't eat a lot but we didn't lose hope.

For the mid-morning snack, we met Marcus Wilken, the child psychologist from Germany.  Aside from being tall, he's not what I pictured.  He is more of a free spirit, outside the box thinking person. He challenged us to think about Joy's needs and desires and to consider alternate ways of feeding her aside from the traditional yucky formula. We also talked about our concerns.  Joy was not drinking enough and we now face the new challenge of administering vitamins and meds without the tube.  Our fear is that she will not like the taste of something and stop eating.  Collectively we came up with some ideas of how she can get her vitamins through natural sources such as blueberries, meats, beets, hummus, etc.  He felt that Joy is old enough to try some of these foods in cooked purees, which after all, tastes much better than drinking a nasty prescription formula.  They are also things that she'll ultimately be eating one day.  She can't be on prescription formula forever!

Reading time with our therapist 

Lunch - Joy was not interested in eating the pureed foods but she did like the fresh oranges. She was learning how to hold and lick them.  Not an easy task for a 9 month old. We playfully would eat some in front of her and even eat some from her hands. The goal was to emphasize that this is food and that it is fun to hold, touch, smell, and taste it.  Heidi, our therapist for this session, tried other types of food but she wasn't very interested in anything other than licking oranges. Right when we were about to give up, we decided to try Neocate splash orange pineapple flavor (since she liked the fresh oranges).  This prescription flavored formula is designed for kids older than 1 years old but given that she liked the fresh orange, it was worth a try.  To our surprise, she seemed to enjoy it and kept drinking.

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Dinner - we went to the spectrum facility for an indoor play picnic. The team felt that we needed to get out and it would also help with Joy learning to eat in other settings. It was far too hot outside and a restaurant setting would have been too much for Joy at this point.  With a blanket on the floor, we gave her a few toys and slowly introduced various foods.  She had her best meal yet!  She ate a whole jar of sweet peas and most of the sweet potatoes.  She drank some formula and water as well.

Play picnic

At the end of the dinner session, we reviewed Joy's progress and concerns.  It was an encouraging day.  She had 4 wet diapers and 3 bowel movements.  We are still concerned about the lack of fluids.  The feeding team instructed us to give her some more water before going to bed and then if she wakes up, try to feed her formula and if unsuccessful, offer some water.

When we arrived home, Kevin and Betty dropped by to give us some home cooked chinese food.  Good timing since it was late and we hadn't eaten yet.  Yesterday, Erica Barnes dropped off huge tray of lasagne. bread, salad, and clementines (which Joy ate).  Very thankful!

This was the first night in the past 5 months that I didn't have to use the feeding pump!

Joy and Daddy