Sunday, January 8, 2012

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.



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