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 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 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:

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.