31 May 2011

Feeding Clinic Update

I began observing Bennett in his feeding sessions today.  I will write more about this in another post.  But I will continue to observe him outside of the room during breakfast in the morning before I begin observing him while inside the feeding room.  This picture was taken through a one-way mirror where I could watch Bennett without his seeing me.  I was able to observe the Feeding therapist utilize the behavior modification plan.  Bennett enjoyed watching Elmo and playing with a toy while the therapist requested that he eat blended macaroni and cheese and drink chocolate milk.

It has been SUCH a vacation not to worry about Bennett's feeding issues for two weeks.  But now that I'm rested, I'm ready to roll up my sleeves and begin learning how to do really move him along towards eating.

Today was a good day for learning information about Bennett's progress.  After having come from a long weekend where the important people here at the Feeding Clinic were on vacation for Memorial weekend, it was nice to be able to get updates on several aspects of what's going on with Bennett's care.

I had a chance to talk to Bennett's Occupational Therapist, Teresa, in depth today.  It's too bad that she's having to be gone for a week and a half to get married (as she's be absolutely wonderful) but she was able to introduce us to our new therapist for potentially the endurance of our time here named Aubrey.  Before Teresa left today, she was able to teach me about "joint compression" and how to use the Wilbarger technique to help Bennett's brain and sensory system organize itself better, especially before he eats.

After speaking with Teresa this morning, I was able to sit down with Ebby, Bennett's speech therapist who is equally great.  Ebby explained to me more about our plan with Bennett and how she hopes to help him.  She seems to be aggressive with him and really wants to push him as much as she can here.  I think this is a good thing.  She is requiring that he drink more and is trying to increase his bite size so that he eats more per meal.  We have increased his meal times to 3 meals, 1 snack and 1 drink.  That's 5 separate sessions per day.  That's 2.5 hours worth of eating per day.   While I realize that 2.5 hours per day at the hospital will eventually translate to 2.5 hours of eating per day at home, I'm glad to see Ebby is really trying to work intensely with him to get those calories in him.  We hope to wean him from another tube feeding before we leave.  Bennett needs 1000 calories per day so he really needs to pick up his calories so we can do that.  Ebby changed Bennett from a chocolate Carnation Instant Breakfast with white milk to a vanilla Carnation Instant Breakfast with chocolate milk and he's instantly begun drinking more.  We have also changed him from the juice bear to using a straw in a medicine cup, which has also improved his fluid intake.

Lastly, I spoke with Laura, one of the team leaders and the child psychologist on staff at the Feeding Clinic.  She has been really helpful with bigger questions Brian and I have about what to expect for the future.  She and I spoke about Bennett's progress and how he relates to other patients who have come and gone at the Feeding Clinic.  She mentioned that only 5% of patients who come for the inpatient feeding program here go home without any need of follow up.  She mentioned that usually those are patients who have mainly behavioral issues regarding food.  However, she explained that most kids who come to the Feeding Clinic at Baylor have more intense eating issues and therefore need lengthy therapy afterwards.

I asked Laura about how Bennett's Cystic Fibrosis affects his outcome.  She explained that most of the CF kids who have come to the clinic have come with mainly behavioral problems, putting most of them in the 5% of kids who do go home without needing much follow up care.  But Laura went on to say Bennett's issues are less CF and more oral/motor issues that come from his lengthy hospital stays and medical interventions when he was a baby (both were complications of CF).  Laura explained Bennett's trajectory and progress is much more consistent with a child with sensory oral/motor eating issues than a child with CF.  So, we are hopeful that while it may take much longer for these issues to resolve, they are fairly normal for kids in his situation.  Laura believes that with the right follow up, we may be able to get Bennett where he needs to be within a year.  This is SO exciting to hear!!

In other news, Nana and Papa have returned home to Missouri (although I still have many pictures to post from their visit).  We had a wonderful visit from my Uncle Darryl, Aunt Laurie and cousins Kendal and Ethan.  And Brian has gone home for a few days to study and check on things on the home front.  Fortunately, my mother has come to stay while he is gone and to take care of Oliver.  I cannot express how much having family visit has helped us all enjoy our time here.  It really has helped us make this transition much better.  It takes sacrifice by family to be here but I cannot thank them enough for loving us enough to be here.  More pictures to follow!

1 comment :

  1. I might have to try the vanilla Carnation with chocolate milk trick! We tried the chocolate Carnation powders with our little man and he wouldn't have it at all. He drinks only chocolate milk now. I wonder if adding in the vanilla power would work?

    So happy for y'all that Bennett is making good progress.



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