Wednesday

Luke graduated from chicken broth to blended peaches this morning. Now I have a Baby Bullet to blend all the wonderful foods he's going to start eating in the near future!

Feeding Program: Midway

Luke and I are now half-way through the day patient feeding program at Our Children’s House at Baylor.  We’ve finished three out of five weeks of the program.  While things are different than maybe I had expected, I’ve been pleased with the people we’ve been working with and pleased with Luke’s progress so far. 

Maybe now would be a good time to describe how a meal feeding Luke used to go.  Because the difference has made me feel so much better about our outlook on this aspect of Luke’s care, even if we don’t accomplish all of our goals within the feeding program itself.  It used to go like this:  I’d fallen into the habit of only feeding Luke a meal orally maybe once or twice a week other than when his speech therapist, Cherish was around.  I eventually found feeding Luke to be too huge of a hassle to do by myself.  We’d both go away frustrated and mad, and having not accomplished anything.    Then I would feel guilty for not working harder at feeding him because eating is a skill he needs to learn so desperately.  Before we’d start a meal, Luke would sometimes cry or fuss even before the meal began.  Then I would sit down and we’d begin by me trying to get him to open his mouth:  “Come on Luke, let’s take a bite.  Mmm.  Good bananas.  Let’s take a bite.  Come on Luke, open your mouth.  Say “ahhh,”  etc.   More often than not, Luke would just hold his mouth closed.  If I could get him to laugh (or even cry, I’m somewhat ashamed to admit) enough to sneak a bite on his tongue, then he’d start the gagging and coughing.  Or if he didn’t gag, it didn’t matter, because he would push 100% of the bite I’d just put on his tongue out of his mouth and onto his bib.  Every time.  Then there’s the hitting.  I avoided feeding him carrots or chocolate pudding because he’d hit the spoon and food would go everywhere:  hair, clothes, floor, stuck to the wall, you get the idea.  I’d also get slapped in the face.  A dozen times per meal Luke would also pull off his HME, and I’d have to go retrieve it from the far corner of the kitchen.  Feeding Luke in his high chair also puts me in a perfect position to get kicked in the chest anytime Luke felt mad or felt like playing or felt like delaying the bite I was trying to give him.  All the while, I’m trying to hold it together, to scold him when he misbehaves, but not too much because I don’t want him to develop any more of an aversion to eating than he already has.  I could usually do this for 20 minutes max before I was completely done and not up to doing it again on my own for a week or more.  It was just too hard. 

The program at OCH started Luke back very near to the drawing board.  They introduced to us a pattern of reward when he does what we want him to do, and a combination of withholding reward and ignoring negative/avoidant behavior.  For instance:  there’s a TV in each feeding therapy rooms.  When Luke successfully takes a bite or allows his therapist to do his oral stretches, he gets to watch a show and/or play with a toy for about 10-20 seconds.  Then we pause the show, put the toy in our laps, and encourage him to take a bite.  One aspect of the program that I love is that they set a timer for 20 minutes for each meal.  When the timer goes off, the meal is over.  It’s kind of like a “saved by the bell” for both of us.  It makes it much less stressful, and I don’t have to feel guilty that I haven’t worked with him long enough.  We ignore avoidant tactics like pulling off his bib, or throwing his HME or his toys.  We’re communicating to him that, “It doesn’t matter what you do.  Right now we’re eating, and you’re not going to distract me from feeding you.  Take a bite, and then you can watch more Super Why.   

Almost without even noticing, we’ve moved from me feeding Luke once or twice a week to 2-4 times a day.  Using these basic hints to modify his behavior has helped tremendously. 

Here’s how our meals go now:  Frequently throughout the day when we’re home, Luke will point to his high chair, say “Eee” (“eat”) and sign “more.”  Yeah.  For real.  I turn the movie on (thanks for the iPad, mom and dad!) and set the timer.  Pause the movie.  I tell Luke “take bite.”  He opens his mouth.  I say, “close lips.”  He closes his lips around the spoon.  I say, “Swallow to your tummy.”  Luke swallows immediately about 90% of the time the rest of the time I might have to repeat the command once or twice.  And about 75% of the time, he swallows all of what’s in his mouth without pushing it out.   The whole process takes about 5 seconds.  I’m still amazed. 

We’re working very hard on helping him learn to manage the amount of food that we give him with each bite.  The therapist’s theory of why he was pushing everything out of his mouth is that it was half habit and half that he was feeling overwhelmed with the amount we were giving him.  This is where we scaled way back.  For about a week and a half, we’ve just been feeding him chicken broth.  We’re only dipping the spoon into the broth to give him a taste, not giving him any broth in the bowl of the spoon.  At first, even though we weren’t giving any volume, his was pushing everything out, even the saliva created by tasting the broth.  With some chin and lip support and behavioral modification, we’ve worked up to giving him about a drop of broth with each bite, and he’s swallowing everything.  The idea is helping him be very successful at this low level of skill, and then we’ll add volume to each bite as he tolerates it. 

At times this process seems painstakingly slow, but I’m thrilled at this progress so far.   I really believe that if we get no more accomplished in the next two weeks, I’m already glad we came.  I feel like I’ve got my feet beneath me now, and I can handle his behavior.  I feel like when the five weeks are over, I can work with Luke’s regular speech therapist to increase the volume he’s getting with each meal.  It may be awhile before we are able to replace one of his tube feedings with an oral meal, but the piece of mind and the confidence I’ve received from my training at OCH is worth a tremendous amount to me.   

I thank you all for your continued prayers as Luke and I commute back and forth to Dallas each day, and as we work to improve Luke’s skill level.  We are very blessed to have a program so accessible to us, and to have a spiritual family like all of you keeping us lifted up.  Thank you so much for your love and support.

Blessings,

Rachael

Playing with Carrots!

Feeding Program: Week 1

I don’t know if I’ll do this every week, because I don’t know how much change there will be from week to week of this program, but I wanted to blog about our experience so far in the day-patient feeding therapy program at Our Children’s House at Baylor. 

First, thank you for all your prayers so far for this particular challenge.  For those of you who haven’t heard what’s going on, here are the basics:  For about 18 months, Luke’s nutritionist has been strongly recommending that we get him evaluated and on the waiting list for the intensive feeding therapy program at OCH Dallas.  Several things have held David and me (mostly me) back from exploring this option until recently.  First, we wanted to concentrate fully on getting Luke’s trach out.  We both had reason to believe that once Luke’s trach came out, oral feedings would go much smoother, and intensive therapy wouldn’t be needed.  I heard stories from another mom whose child was trached until age two.  The child had eaten next to nothing orally before, but was eating pancakes the day after she was decannulated.  While I never was holding out for instant success quite like that, I dreamed of feeding being much easier than it is now.  Second, the program takes place at Our Children’s House at Baylor in Dallas.  We spent five weeks inpatient there in between Medical City and home.  I still can’t put my finger on why, but that place still evokes some very dark memories and emotions.  I couldn’t envision subjecting ourselves to that place again for an extended period of time. 

As you all know, our hopes for Luke getting decannulated this past summer did not become a reality.  Luke is getting older (two and a half!), and seeing as we will have to wait to get his trach out until spring at the earliest, eating made its way to the top of our list of priorities. 

Our nutritionist told us that there is a months-long waiting list to get an evaluation by the program, and then another months-long waiting list to get into the program itself.  I started the process in October, and the director gave us an evaluation date in February.  We settled in for a long wait.  In early December, the psychologist in the program told me Luke would be starting the day-patient program January 3.  After some confusion, it was decided that Luke could go ahead and begin the program without an evaluation, and the therapists would evaluate him on the spot on the first day of the program so he could begin Jan 3. 

Luke’s first day of the feeding program was Tuesday.  David went with us the first day to help us get acclimated.  Everything went smoothly.  The commute hasn’t felt nearly so much like it did when Luke was inpatient there as I thought it would.  We’re in a completely different area of the building than we were before, so it’s not too hard to take this as a whole new experience instead of carrying those negative feelings from our previous stay with us.  I’ve been trying very hard to stay in the moment and learn all I can and not let Luke’s entire medical history overwhelm me as it sometimes can in situations like these. 

Luke and I leave the house and arrive at OCH just before 8 am on Monday-Thursday mornings.  First Luke has speech therapy for 30 minutes where the therapist does stretches and oral exercises with Luke.  She has been practicing with Luke with an empty spoon to encourage him to open his mouth, accept the spoon, and close his lips around the spoon without the pressure of food. 

For the next 30 minutes, the therapist feeds Luke a meal, still working on accepting the spoon (with or without food on it), closing his lips around the spoon, and attempting to keep the bite in his mouth (he has a terrible habit of pushing the food out of his mouth with his tongue and swallowing maybe only 10% of it).   By watching from behind Luke, so I don’t distract him, I’ve learned how to stay consistent with the language I use to encourage Luke to take a bite, to appropriately address his avoidant behavior, and really cheer him on every time he does well.  I’ve also learned how she makes appropriate use of a timer (the meal isn’t over, no matter what kind of fit you throw, until the timer beeps) and a movie (you can watch the movie as a reward, but when you don’t take your bite, we stop the movie until you do). 

For the next hour, Luke has occupational therapy.  I admit that I’m less impressed with this portion of the program so far.  I expected the OT would spend the hour working on skills that would lead up to Luke feeding himself, but so far that’s not the case.  Monday I will ask the therapist some questions and see if we can make a plan that is more in line with our hopes and goals for what we want the program to accomplish. I have gotten some really great pictures of Luke in a helmet riding the tricycle though! 

After OT, Luke has a 30 minute break.  Luke plays with the iPad or the toys in the play room to blow off some steam.  Last, Luke has another 30 minute meal.   This meal is supposed to take place with the psychologist, but she’s been out this past week due to a shoulder injury.  Instead Luke has been having his last meal with the speech therapist again.  That’s been fine, but I’m looking forward to talking with the psychologist, hopefully on Monday and getting her perspective on things. 

Thursday was the most difficult day.  Luke threw a fit during the first meal, and I jumped to soothe him.  The speech therapist corrected me and asked me to ignore his fit and let him choose to take a bite when he realized I wasn’t going to rescue him.  This correction stung a little, as you might imagine, but to her credit and his, Luke quit his tantrum as soon as I had finished suctioning him.  He was then clingy and cried through much of his OT session.  Luke’s nurse and I theorized that Luke was trying to get me to “rescue” him again so he wouldn’t have to work.  I made the decision to leave the room for his last meal so I wouldn’t be a distraction to him.  This was very hard for me to do, because when I told the therapist about my decision, she told me that the protocol for the week was to not allow parents to watch through the window either (I don’t know why).  So with teary eyes, I went to wait in the community room with the other moms and kids.  Luke’s nurse reported that he had a fairly good meal.  Needless to say, we were both ready for the early weekend.

This weekend has made it evident how much a little knowledge and firm consistency will take you.  Luke has been eating this weekend better and more quickly than he ever has before.  We still need to work on keeping the food in his mouth, but learning the strategies that I have in only three days has truly helped both of us.  David and I have successfully fed Luke two meals each day of this weekend, and at four of those meals, Luke has finished all of the food I’ve measured out for him (it’s not a lot of food, but we’re starting out small) in the 15 or 20 minute mealtime. This is quite an accomplishment, and it’s boosting my confidence. 

I just want to end with a word of thanks for all of your continued prayers that Luke will completely blow away all of our expectations for him during this program, and that we can have energy and a good attitude during the commutes and long days ahead this month.  I hope that next week at this time I’ll be telling you of all the milestones Luke has reached.

Blessings,

Rachael