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.  

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.