The Breakthrough Meal

Any tubie mom knows the feeling you get when you walk into your child's room in the morning to get them out of bed and see this:

That sinking, stomach-in-your-throat, heart-in-your-belly feeling.  The feeling that you get when you know you have unwittingly deprived your child of 900 calories that he so desperately needs.  You can't give him those calories back if you want him to eat orally throughout the day, so they are lost, gone forever.

These things happen in the tubie world, and it's almost always a pump issue.  This time it was totally our fault.  A miscommunication between Shane and myself led to the lost calories, but it turns out that it was totally worth it.  

Our son was hungry today.  Hungry.  I saw him ferociously seek out the snacks in his therapist's bag when she arrived.  I saw him (without asking) rip open the baggie of crackers and instantly begin putting an entire cracker in his mouth, not taking his normal crumb-baby-bites.  I saw him ask Ms. Maria to eat instead of playing their normal games first.  Asking to eat.  

I watched him climb up into his chair at our table and pour the entire bag of mini Ritz crackers out on his plate and without blinking an eye popping them in his mouth like he'd been doing it for years.  I watched him grab other baggies of snacks that were laid out, open them, and pull out the contents, trying each one.  Feeling lucky, Ms. Maria and I added a tablespoon of peanut butter to a bowl, and I watched as he spread peanut butter on his mini crackers and ate them like he didn't have a sensory issue at all.  I even watched him  scoop heaps of peanut butter onto his little knife and bite it off.

In about 30 minutes, Greyson had devoured more than he has ever eaten in one sitting.  29 mini Ritz crackers, 1.5 Tbsp of peanut butter, 3 Ritz flatbread crackers, and 5 cheese balls.  308 calories.  

My child had a typical meal.  I'm not sure if this feeling can even be described appropriately.

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 Eight (and Six and Seven...)

Life has been crazy the past few weeks, and I've been slacking on feeding updates.  We have been hanging in and doing pretty well with feeding.  Greyson has been consistent with his volumes.  You'll notice that G eats a whole lot of yogurt.  We have found that this is his "go to" food, as he really actually likes it.  The reason we give him so much yogurt is because he takes the most volume of it.  We try to switch it up with the flavors of yogurt.  This is one of my questions for The Children's Institute is how can we start to move him to a bigger variety of foods and keep up his volumes.

You may also see a difference in the volumes that he's eating.  Please understand that we've been a bit more flexible with our mealtimes because of our schedule this week, and are also starting to allow G to pick at crunchy foods more which won't show in his volumes.  It doesn't mean that he is doing worse, he's doing very well.  We've also gotten too lax in our recording of his eating (woops! will be working to fix that...)

The most amazing development in the last few weeks happened just this Tuesday...see video below.

Foods that G has eaten the last few weeks:
vanilla yogurt
whole yogurt with honey
strawberry banana yogurt
mango yogurt
banana yogurt
chicken and dumpling soup with butter (pureed)
pureed ravioli with butter
cheese curls
chicken and rice soup with butter
bean and bacon soup with butter
Ritz crackers
white cheddar cheese curls
Life cereal

Total volumes this week:
Saturday:  6 ounces, 2 cheese curls, and nibbles of party food (hummus, crackers, M&Ms, etc)
Sunday:  9 ounces
Monday:  9 ounces and 20 mL
Tuesday:  7 ounces and 2 cheese curls
Wednesday:  8 ounces and 15 mL
Thursday:  6 ounces and nibbles of rice cakes

And now for the amazing and coolest, most awesome and wonderful development thus far in our feeding journey, all caught on tape.  Ladies and gentlemen, our son has discovered self-feeding.

Feeding Update Friday: Week Five

Greyson continues to amaze (and amaze, and amaze, and amaze...) us.  Shane and I have been battling some kind of bug that made us very achy and exhausted, and Greyson has been slightly congested.  Even battling a small cold, Greyson has continued progressing with his feeding.  We were almost sure that his feeding would suffer when he wasn't feeling well, and so far that has not been the case.  What a champ!

Amazingly, Greyson has not caught what Shane and I both had.  We have some not-so-secret-but-relatively-unknown weapons for keeping Greyson's cold a "small" one, and believe it's the reason he hasn't gotten our bug.  We've been boosting his immune system for about 2 weeks now with vitamins and supplements.  Stay tuned for a post about those...

So despite the yuckiness in the house this week, Greyson's been moving forward with eating.  He's barely showing any poor behaviors right now, and has actually asked for yogurt a few times!  YES, folks, asked to eat.  I know, I know.  Tear.  He has taken a slight slide back with his crunchy food, but we continue to work on it.

When we met with the Children's Institute, they told us not to focus so much on how many different foods he was eating, but to focus on the volume of food he was eating.  You will definitely see a difference in the number of foods he's eating, but you will see huge increases in the volume of food he is eating.

Foods that G has eaten this week:
whole yogurt with honey
juice
chicken noodle soup with butter (pureed)
penguins
vanilla yogurt
hot tea with honey
chicken and dumpling soup with butter (pureed)
pizza

Total Intakes:
Friday:  10.5 ounces and 1/2 penguin cracker
Saturday:  8 ounces, 10 mL
Sunday:  5.5 ounces (we had to skip a meal this day)
Monday:  12 ounces (1.5 ounces of that was hot tea)  (our golden day!)
Tuesday:  11 ounces
Wednesday:  10.5 ounces, 2.5 penguin crackers
Thursday:  11 ounces

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!)

Feeding Update Friday: Week Three

This week has had it's ups and downs, but we've changed some things that have yielded mostly ups!  

I am giving Greyson more time in the morning to wake up and get activity before he has to sit in the chair and eat.  He wakes up, he gets some physical activity by bouncing on an exercise ball, going up and down the slide, pushing his mower around the yard, etc.  About an hour after he gets up, I'll sit him in his chair for some kind of sensory activity, usually play doh.  After 15 minutes, I introduce his food to him, and this routine has seemed to help some of the morning issues we were having.  He is still showing some avoidance to behaviors, but this has made a big difference in the tone of our mealtimes.  

One thing that we are seeing since coming home is a big change in Greyson's emotional state.  He's always been a very easy going kid who was able to rationally handle his emotions without getting over the top.  Since coming home, he has been super emotional, getting upset at the drop of the hat.  We a pretty sure this is due to all of the changes and new expectations of him, and are working him through this tough transition with lots of love and understanding.  He's getting upset at things that never upset him before, like getting tangled in his oxygen, getting stuck somewhere because he's out of cord, or sometimes for no reason at all.  We are working with him to take deep breaths when he is so upset that he can't tell us what is wrong, as well as staying very calm and just giving him hugs and love when he is that upset.  

It's a work in progress, as always!

Foods that Greyson has eaten this week:

Chocolate pudding

Vanilla yogurt

Strawberry Banana yogurt

Honey water

Juice

Puréed potato soup

Spaghetti purée

Ritz crackers

Penguin crackers (off brand whales)

Goldfish crackers

Pizza

Vanilla wafers

Butter bread

Total intakes:

Friday:  3.5 ounces, 10 nibbles of pizza. And 1 ritz cracker

Saturday:  2.5 ounces

Sunday:  6 ounces and 10 mL

Monday:  5 ounces, 5 mL, and 1/2 vanilla wafer, 1/16 piece of butter bread

Tuesday:  5.5 ounces and 7 mL

Wednesday:  6.5 ounces and 10 mL (golden day!)

Thursday:  5 ounces

Feeding Update Friday: Week Two

We began this week feeling a bit defeated, and I am happy to report that we have worked through some of our issues and seem to be ending on a much more positive note than last week.

At the beginning of the week, Greyson was really beginning to challenge us for his meals, especially breakfast.  There was lots of swatting the spoon away, yelling, and (ugh) even hitting me.  Those of you who know me personally know that in no way would I ever let my child get away with hitting me, let alone anyone else, so this was extremely challenging for me to work through.  There were lots of tears, lots of getting up to remove myself from the situation before I reacted (how I so badly wanted to, but couldn't), and lots of desperate texts to my husband for reassurance.  I've also troubleshooted with Greyson's SLP from The Children's Institute as well as Greyson's OT through Early Intervention and come up with several ways to help this new issue.

I've also come to the conclusion that Greyson needs some more time in the morning between waking up and eating, so we have come up with a new morning routine to hopefully get through this rough patch.  He wakes up around 9, and I was trying to feed him at 9:30.  We are going to try giving him at least an hour before getting him in his chair to do his sensory play and then mealtime.  During this hour, we are getting in some kind of fun physical activity.  Ms. Maria (OT through Early Intervention) brought us a fun slide to play with before mealtimes and Greyson loves it!

We had Greyson's feeding evaluation at York Hospital this week also.  While they seem like a great program, they just aren't able to follow the model set up by The Children's Institute (which we know is working), so we won't be going there for weekly therapy.  On the positive side of this, we are able to return to Greyson's original SLP because she is open to using CI's model for feeding!  Greyson will be so happy to see her again.

A few positives from the week:
     -we've got a solid plan to continue moving forward
     -Greyson is eating wonderfully for Shane in the evenings
     -we're beginning to expand food choices
     -we have made the decision to return to Greyson's original SLP for weekly sessions
     -Greyson has been much more interested in the foods that we are eating, and even scooped some very finely cut spaghetti with a spoon and ate it.   This is the first time ever Greyson has self-fed with a spoon!

List of foods Greyson has eaten this week:
     -stuffed shells and sauce
     -yogurt (vanilla and strawberry/banana)
     -whale crackers
     -goldfish (original and grahams)
     -cup of noodles (pureed)
     -chocolate pudding
     -grilled cheese sandwich and tomatoe soup pureed (it actually tasted yummy!)
     -spaghetti, sauce, and butter pureed to a fine chunky texture
     -graham crackers
     -juice
     -chocolate milk
     -yogurt drink

Total Daily Intakes:
     Friday:  5 ounces and 5 whale crackers
     Saturday: 55 mL (almost 2 ounces) and 4 whale crackers (very rough day)
     Sunday:  4 ounces and 20 mL
     Monday:  6 ounces and 5 mL
     Tuesday:  6 ounces and 15 mL (our golden day!)
     Wednesday:  3 ounces and 20 mL and 3 Goldfish grahams
     Thursday:  5 ounces and 20 mL and 1/8 graham cracker

OT session before mealtime

Feeding Update Friday: Week One

Our first week home has proven to be a difficult one.  When we left the Children's Institute, Greyson was eating between 5 and 7 ounces orally a day with very little behavioral issues during mealtime.  Now that we have gotten home and are trying to settle into a routine, Greyson has reverted to using some of his favorite poor mealtime behaviors, as well as a few new ones.  His intake is still good considering just 3 weeks ago he wasn't taking anything orally, but it has been decreasing

We are really struggling with Greyson flat out refusing to take a bite of food.  He's doing lots of swatting the spoon away, crying, covering his mouth, and yelling "No! Stop!".  We've had to get very creative to try to continue his progress, and we are hoping to begin seeing some improvement soon.  It's been incredibly frustrating for Shane and I, but we haven't and won't be giving up.

List of foods Greyson's eaten this week:
     -vanilla yogurt
     -chocolate pudding
     -pureed macaroni and cheese
     -pureed stuffed shells and tomato sauce
     -pureed chicken and dumpling soup
     -vanilla yogurt drink (half yogurt, half whole milk)
     -goldfish crackers

Total Daily Intakes:
     Saturday:  5.5 ounces and 3.5 goldfish crackers
     Sunday:  8 ounces and 3.5 goldfish crackers (Our golden day!)
     Monday:  6 ounces and 10 mL
     Tuesday:  3.5 ounces and 1/4 sheet graham cracker
     Wednesday:  5 ounces and 3 goldfish crackers
     Thursday:  3.5 ounces and 3.5 goldfish crackers

PS.  Is anyone else as jealous as I am that I can add butter or oil to everything Greyson eats?  I fondly call it the Paula Deen diet:

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

Anatomy of a Mealtime Session

I thought it might be helpful to show you an entire mealtime session. And talk you through what's going on and why.  Luckily, the meal I recorded was a decent one, and you can see many of Greyson's issues presenting themselves throughout.  Notice that I try to stay positive throughout the entire session, as it is extremely important that he doesn't associate mealtimes with negativity.

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!