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 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 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.

A Weekend Break: The Children's Museum of Pittsburgh

Shane got here for his weekend visit Friday evening.  Greyson was so excited to see his daddy, and smiled all evening.  Saturday morning we took our time relaxing a bit, and made our way to the Children's Museum.  (Once again, the Ronald McDonald House does such amazing things.  They have tickets to several attractions in Pittsburgh for families to enjoy while they stay, so our trip to the museum was free!). Greyson had a blast, and if you are ever in Pittsburgh, I highly recommend visiting the Children's Museum!  Here's a photo journal of our day: