Tuesday, December 2, 2014

Jaylie - Intensive Feeding Therapy Day 1

Morning Session (feeding #1):

The morning session Jaylie showed little interest in food, only eating a couple of nibbles of things. Though Jaylie didn't eat much, she did play with all the foods presented to her, showing no fear or apprehension of the foods themselves. The therapist said Jaylie was doing really well in her familiarity of different foods and textures by being able to touch and play with them, and that this familiarity was a big deal, a stepping stone into eating foods. 

The therapist advised the goal was to key Jaylie into her own feeling of hunger and teach her how to address this feeling though eating (she didn't say these words exactly, I'm paraphrasing a bunch). 

The therapist advised the goal was to encourage Jaylie to eat when she feels the desire to eat but not try and make her eat at random times - this tying into the goal of teaching Jaylie how to identify and address the feeling of hunger. 

The therapist also advised the approach we are taking to try and key Jaylie into her own hunger is to setup a structure around eating that would psychologically and physically prompt Jaylie to eat on her own. The therapist advised the setting up of a routine eating times along with coaching, encouraging and modeling eating behavior has been found to be successful in teaching kids with oral aversions to eat.  

These therapy sessions are more around teaching the adults in Jaylie's life how to teach Jaylie how to eat than a magical set of sessions that instantly cure oral aversions.  

With that said, the morning session went better than expected even though Jaylie did not eat much at all. 

We tried the following foods during the morning session:

String cheese 
Fishy crackers 
Apple sauce 
Graham crackers 

Lunch Session (feeding #2):

During the morning session the therapist advised we should make our eating sessions with Jaylie as normal and as routine as possible. Being the engineer and opportunist I am, I took this literally and advised Kristina we needed to go and buy lunch for everyone and bring it to our session, including Jaylie's new favorite item a grilled cheese sandwich. 

By the time we got the the afternoon feeding session (12 pm) Jaylie was starving. She had had next to nothing to eat all day and little known to us was ready to dig into food. 

The therapist had the table all ready for us to sit down and try eating some stuff including carrots and cut up apple. We could not even all get seated before Jaylie grabbed an apple slice and started to munch on it. This was a great sigh and a definite improvement from the morning session. As Jaylie continued to nibble on the apple slice, we unpacked the food we bought at the cafeteria and started to dish it out, including giving Jaylie her grilled cheese sandwich. Jaylie nibbled at the crust and bread of the grilled cheese sandwich, eating and swallowing food, demonstrating to the therapist she could eat when she wants to. 

Jaylie continued to nibble on things for 30 mins or so while the therapist talked to us about what she was observing and how far along Jaylie was towards eating. 

The therapist advised it is expected kids don’t eat much and lose weight the first week — this is part of the process of teaching Jaylie about hunger and how to deal with hunger.

The therapist advised we will be working with Jaylie to get her to eat different types of high calorie foods such as whole milk, cream, butter, etc, with the goal being to get Jaylie to consume more calories orally. 

Based upon Jaylie’s familiarity with foods, and demonstrated ability to eat, the therapist advised we could go home to work on eating sessions 3 & 4, which we took her up on :).

Late Afternoon (feeding #3 - snack at home)

The drive home from the hospital is an hour + depending on traffic and so by the time we got out of the hospital, home and the car unpacked it was time for feeding session 3 (a snack). We told Jaylie it was “snack time” and asked her what she wanted. She enthusiastically said “Cheerio’s! Popcorn!”. So mom (Kristina) made some popcorn and got out some Cheerio’s. 

In keeping with the theme and instructions, we engaged with Jaylie while she was eating making it more of an interactive shared snack time. We played counting games, which severed a dual purpose, one to engage Jaylie in something she likes to do and two to keep track of what Jaylie is eating exactly. The grand totally was Jaylie eating 55 pieces of popcorn, 60 cheerios and a couple of sips of chocolate milk — all in all a good snack session for everyone :).

Dinner at Toreros (feeding #4) 

For our 4th eating session of the day we took Jaylie to a family dinner for her cousin’s 3rd birthday. We got there early and we able to get Jaylie (with no prompting at all) to eat chips and order her another grilled cheese sandwich. As soon as everyone else started to arrive, Jaylie’s grilled cheese sandwich arrived as well, keeping her on track with eating every couple of hours.

Jaylie nibbled at the crust, not as enthusiastically as early in the day but ate some none-the-less. All-in-all Jaylie did well at dinner eating around 5 chips, ~10 nibbles of grilled cheese crust and some small bites of ice cream.

End of Day Snack (feeding #5 - snack at home)

The dinner at Toreros when for a couple of hours and so by the time we got home it was time for Jaylie’s last snack of the day, her only formula tube feed, then off to bed to rest and prepare for the second day of feeding therapy. 

Jaylie again asked for popcorn and cheerios during this snack session. Admittedly we were not as involved with this snack session, leaving Jaylie to eat solo for a couple of mins while we got things ready for bed and prepared for the next day. We did not completely drop the ball though, coming back around the second half of the snack session to work on eating cheerios and popcorn. By this time of the evening Jaylie was tired and getting a bit cranky, with the crankiness being exacerbated by the lack of calories Jaylie is currently getting. The therapist advised Jaylie would most likely become a bit more agitated during this program due to the restriction of calories — that they would be watching her mood and weight closely to ensure things don’t get out of control.

Jaylie ate more popcorn and cheerios during her last snack session of the day, somewhere around 20 pieces of each.

We put Jaylie to bed with a rocketship ride (her new thing) from the couch to her bed with her laughing and giggling the whole way.

All-in-all it was a great day for Jaylie and eating.

The therapist advised our main goal would be to get Jaylie to eat 50% of her calories by mouth by the end of the two weeks. So far we are on to a great start.

Please keep us in your thoughts and prayers.

Merry Christmas!

Love Jaylie, Kristina & Nathan