Feeding Update Friday: Week Ten and Eleven

Okay, so the last update was that Greyson was able to move towards table foods for his mealtimes as opposed to all purees.  We've given it a good three week trial period, and we have not liked what we've seen.  While we knew we would be losing some volumes because of the switch, we've seen a pretty steep loss in volumes, even in his one-meal-a-day of yogurt.

When given softer table foods, Greyson is mostly just playing with them.  Sometimes he'll take tiny, tiny bites of something, and sometimes he just flat out refuses.  His breakfast meal of yogurt has been between 1 and 6 ounces, which has varied greatly from his consistent 4-6 ounces before the switch to table foods.

Talking with Greyson's OT and SLT over the past two days, we have come up with a new plan.  We are going to go back to mostly purees, while still presenting him with a few more table food choices.  This way, he will still be getting more consistent volumes while getting more experience with table foods.

I know this is a work in progress, but it can be absolutely exhausting to try to figure it all out.  On a positive note, Greyson is doing well playing with foods.  Today when I was making lunch Greyson was at the table with some slices of colby jack cheese.  I peeked over at him and saw him smiling so big, pointing at his ears with both hands saying, "Mommy!  Cheese, ears!"

  

He had shoved tiny pieces of cheese in both ears, and thought he was the coolest thing ever!  

Feeding Update Friday: Week Nine

This Monday we went to The Children's Institute in Pittsburgh for a follow-up appointment.  They were very pleased with his progress, but also think that he is ready to move on from all purees to more table foods.  This is a huge step, and one that is going to shake things up a bit.

Measuring and recording how much table food G eats is not an easy task.  It's hard to keep track of calories he is taking in because measuring table food is difficult.  Because of this transition to more table foods, we are working on a better system to track what he's eating and you will also see a huge decrease in the volume of food that he is taking in.  It does not mean that he is doing poorly or regressing, it is a step in the right direction to eating typical toddler foods.

Because of this change, Feeding Update Fridays are going to look a bit different.  Instead of listing volumes, I'll just be listing the different foods that G is trying out.  This week, we were trying to get ourselves into the new system, and did a terrible job trying to write things down, so instead, enjoy a picture of G enjoying some Halloween treats!

Feeding Update Friday: Week Four

It's been a great week for us. Monday we went to the Children's Institute for a follow up appointment.  They gave us an A+ for the month (which was a shock for me), and gave us some tips for the next month.  He did lose a little weight, and is back down to 22.5 pounds, but they gave me some ideas how I can calorie boost the things that he is eating orally.  

Greyson has been fighting a small cold, and we were nervous that it would slide back his progress.  In fact, the complete opposite has happened and he's doing wonderfully!  His poor behaviors are very few and far between, and we seem to have gotten our groove back.  Let's hope we can continue to be on the same page!

Foods that G has eaten this week:

Chocolate pudding

Strawberry banana yogurt

Vanilla yogurt

Plain yogurt with honey

Penguins

Pizza

Chicken noodle soup and butter

Goldfish Grahams

Milk

Juice

Total Intakes:

Friday: 3 ounces

Saturday:  4 ounces and 2 penguins

Sunday:  unknown (we were traveling and forgot to write totals down! Woops.)

Monday: 6 ounces

Tuesday: 7 ounces and 1 penguin

Wednesday:  7.5 ounces, 1 cheez-it, and 3 Graham's

Thursday:  8.5 ounces and a few bites of pizza (our golden day!)

Coming Home

The end of our (possibly first round) intensive feeding therapy went really well.  Shane came Thursday evening so that he could meet Greyson's therapists and see them in action.  We were nervous that throwing Shane into the mix was going to throw Greyson off of his game, but it totally didn't.  He showed off and did really well on his last day.

We got very specific instructions from his therapists about how to continue his progress at home.  Both of us are aware that there may be a "transition phase" and Greyson may back track on his progress a bit, and/or revert to using some of his problem behaviors during mealtimes.  While this scares me, I am actually leaving the program feeling confident that I know how to handle these issues now.

What Is To Come: Figuring Out How to Come Home

Since we are in our last week of Greyson's feeding program, we have begun discussing what needs to continue and what needs to be done when we get home.  The Children's Institute would like to see Greyson once a month to track his progress and be the "hub" of his eating issues.  We've been working to find a program that incorporates an OT, SLP and a dietician to work with Greyson cohesively, and more frequently.  We're trying to set up a model where his therapists work closely together (including his early intervention therapists) so we are all working on the same skills and using the same techniques.  That is a work in progress....

There has been discussion about bringing Greyson back next spring or summer for another intensive stay, one that is around 6 weeks long.  Greyson was very successful learning the routine of a mealtime and tolerating small amounts of food for this stay, so the goal of another intensive stay would be to increase the volume of food that he is eating to (hopefully) begin tube weaning.  We will re-evaluate next spring and decide what's best based on how our winter goes and how much progress we can make ourselves at home.  

One thing I am concerned about is how I am supposed to fit everything in once we are home.  I have created a schedule for myself to stick to as far as housekeeping, working, and scheduled mealtimes go, however with multiple therapy appointments a week, things could get hairy.  I'll have to figure out a way to fit in once-a-month trips to Pittsburgh, frequent trips to Philadelphia for his follow ups at CHOP, and figure out how to do all this with the coming cold and flu season.  I'll be crossing that bridge as it comes, as I always do.  

Weekend Break: The Pittsburgh Zoo

After our successful week, we were so excited to have daddy come visit us, and he brought along Mamaw, Papaw, and Aunt Lenae too!  We packed up and went to the Pittsburgh Zoo on Saturday.  Here's a photo journal of our day.

Snow Leopard

Halfway Update

We have officially made it halfway through the Functional Feeding Outpatient Program at The Children's Institute.  We have made progress, and though small, it is still moving forward.  I have to continue telling myself that, because I question myself often whether or not this was the right program for us.  Most feeding programs are 6-8 weeks long, and that is the one part about this particular program that held me back from making the decision.  This program is only 3 weeks, and knowing Greyson's medical history and struggles, I knew in my heart he would need longer.  His speech therapist and I discussed the fact that he would definitely benefit from a longer program, but they don't have the coverage to make it any longer than 3 weeks.  There are most definitely benefits to coming here as opposed to a longer program and I am okay with the decision that we made.  Many of the other feeding programs are so intensive that there are reports of force feeding, and we did not want that for Greyson.  While these programs yield excellent results, we wanted Greyson to be able to move at a rather intensive pace but also more self directed at his comfort level.  This program does just that, has high expectations for him, but also takes his limits into consideration.  For this I am happy with our choice.

When we began, Greyson didn't tolerate a spoon coming at him at all.  In this program, he has taken a maximum of 4 ounces of diluted juice off of a spoon, and has accepted a yogurt/milk dilution, and puréed macaroni and cheese!  While he's still not taking much volume of these to consider taking part of his tube feeds away, it is a step in the right direction.  The goal is to try to increase volume of some of these foods in order to decrease his tube feeds to begin tube weaning (ahh...tube weaning!).  This afternoon he ate two whole goldfish crackers, and handled the bites so beautifully I teared up throughout the entire session (insert proud mom smirk).

We've also met some challenging mealtime behaviors while here.  We'll continue to work through his frustrations at mealtime in order to make mealtimes more pleasant (for the both of us).  He still has much work to do sensory-wise, and we will be adding once "therapy" session a day for this at home.  This means at least one "messy" activity a day (play doh, playing with food items, shaving cream, etc.). We are also waiting for recommendations on what therapists to use when we go home.

We are both very tired today, tired enough to wear my yoga pants (which I may be doing much more often).  I'm finding it difficult to shut my brain off at night, so I'm staying up way too late.  I'm hoping to get some rest this weekend when Shane and his parents and sister get here for a visit.  We are also going to the zoo, so be sure to watch for a post with pictures.  

Mealtime Challenges

The past two days have presented themselves with some challenging behaviors during mealtime, as well as some challenges for myself as a mother.

Monday morning, we decided to try having Greyson's speech meal with me out of the room to help minimize the poor behaviors that were developing.  He had become accustomed to me always being right there, which meant that as soon as he was uncomfortable, he was reaching for me as a way to avoid the situation.  Wile I was ignoring him, it was still interfering with his sessions and progress, so this was the next step.  Unfortunately, this had the opposite affect than was desired.  Greyson immediately started crying, reaching and pulling towards the door, refused to even sit in the high chair, and didn't stop for the entire 20 minutes that Ms. Patty tried to distract him.  She stayed very warm and calm throughout this, and continued trying to play with him while holding him and distracting with toys.  None of it worked, and after 20 minutes, she allowed the door to come open and for us to hug.  I was able to watch everything transpire through a double mirror, and listen with headphones (although he was crying so hard I didn't need them).  As mothers, our first instinct is to protect our children when they are feeling threatened or scared, and to comfort them when they are upset.  That's what moms do.  I'm not even able to describe what it is like to sit on the opposite side of a door and have to watch your child be in so much distress, and not be able to do anything about it.  There was a purpose to this madness, and I understand that, but it did not make it one bit easier.  I cried for him while he cried for me.

The Honeymoon is Over

Greyson's been doing really well at his therapy sessions, despite being a very tired boy.  On Thursday, we moved to trying some diluted apple juice (50/50 water/juice) on a spoon, and he took 2 ounces during one session!  That is a major, major deal.

Friday morning, some diluted applesauce was introduced.  Greyson had a lot of trouble with the texture of it, even though it was heavily diluted.  He sputtered and spit out (or wiped out) the few bites he did accept, but quickly decided he was not going to accept any bites.  He began crying, reaching for me, and calling my name.  It's very hard to see your child obviously upset and wanting/needing you, but being able to do nothing.  That behavior (during mealtime) is something that needs to be ignored, so as to not reinforce it in any way (positively or negatively).  There was also some obvious manipulation, because at one point, he looked at me out of the corner of his eyes and smiled.  That boy.  We always end sessions on a positive note, usually Greyson accepting one more bite, and then lots of praise and he can get down. 

Small Successes

Most people find it very difficult to understand when a child won't eat orally.  "He's just going to wake up and do it one day" is something that I hear all of the time, and that's simply not the case.  It's going to take a lot of hard work and consistency on our part and his part in order to see a difference in his eating skills.

We had a pretty good day in therapy, and while both of us are dog tired, we are celebrating a few successes today.  Greyson took 30 mL (one ounce) of water from a spoon today.  He also took over 30 bites of Goldfish crackers!  Our "homework" tonight was to try another session with the Goldfish.

This video is a bit lengthy, but you can see how frustrating (for the both of us) mealtime can be.  You can also see that, yes, in fact, some children refuse to eat orally.  I wanted to give up right away during this session, but continued, and you can see the reward at the very end :)  Notice Greyson's mouth when we get the book out-his mouth begins to chew even though he's not eating.

Functional Feeding Program Begins!

We arrived in Pittsburgh around 2:30 pm on Sunday, got checked into the Ronald McDonald House, and spent almost 2 hours trekking to and from the car (in a parking garage) with all of our belongings.    We made a quick trip to the grocery store to buy some cold items that we couldn't transport.  By dinnertime, I was exhausted, and G was fired up and ready to run around.

The Functional Feeding Program at the Children's Institute of Pittsburgh

It's been a long, crazy summer, but we're finally getting ready to leave for the Functional Feeding Program at the Children's Institute of Pittsburgh.  We recently got our schedule for each day of the week, and when they say it's intensive, they aren't kidding!

9:30 am-10:30 am:  Speech Meal and Nutrition session
10:00 am-11:00 am:  Break for G's Bolus Feed
11:00 am-11:30 am:  Occupational Therapy session
11:30 am-12:00 pm:  Behavioral Psychology Therapy session
12:00 pm-1:30 pm:  Break for my lunch, play, and/or rest
1:30 pm-2:00 pm:  Speech Meal session
2:00 pm-2:30 pm:  Occupational Therapy session

We are hoping to have a room available to us at the Ronald McDonald House, but there is a possibility that there is not.  If we are lucky enough to get a room, it will be great, because the RMH has play rooms, books, toys, and nightly activities that we can keep ourselves busy doing when we are finished our sessions for the day.  I'm sure we may both need a nap before partaking in evening activities, though ;)

I will be keeping you all posted on our progress throughout our time there!