Out-Patient Feeding Therapy

Whitney has been in feeding therapy since she came home from the NICU at 2 months old.  She even got help for a few weeks in the hospital.  At first, the therapist came to our home for sessions once a week.  But when a child just won't take a bottle and screams every time they see it, there's just not much you can do.  After trying to find the right meds to help, the right formula, medical tests and procedures, and a million tips and tricks on how to feed a baby, she really needed a feeding tube to help her survive.   

 We still continued to go to out patient feeding therapy.  Along with the in-home therapy, we sought out another therapist to help Whitney.  We lived in Peoria at the time and the feeding therapist was in Scottsdale.  So we traveled and hour a week to see her.  Our feeding therapist were great and Whitney and I benefited from seeing them regularly. 

Not only was Whitney getting professional help a few times a week, but I was also trying to feeding her daily.  I would still try the bottle every 2-4 hours every day and night until she was one years old.   She and I were both happier to not have to stress about that anymore.  When she started table foods around 9months old, she still didn't do great.  Some times she would eat a tiny bit but mostly she refused.  So at 13 months old, Whitney finally got her gastrostomy mickey button feeding tube.

Even though I've read books and blogs about eating and meal times, nothing seemed to help.  We still continued feeding therapy and more tests and procedures to try to help Whitney learn how to eat.  But when you are terrified of anything going in your mouth, and would rather starve then eat/gag and vomit, it's super difficult to teach a child to eat.  I can't even tell you how many tips and tricks we've tried.  This poor girl vomited several times a day.

We had to get Whitney a GJ feeding tube because she was throwing up everything and lost too much weight.  So we slowed down our feeding therapy for a few months.  It really helped her body to grow although she would still try to vomit a lot.  The tube part in her intestines flipped back in her stomach once or twice a week for the few months we had the GJ tube.  So we had to go back to the G-tube, but she seemed to tolerate her feeds again.

  

When Whitney had just turned two years old, our family moved from Arizona to California for school.  It was really hard to leave our family and friends and all the Doctors and Therapist that we have come to know, love, and rely on.  I was also pregnant with Whitney's baby brother, Cameron, and was due in Nov. of 2012.  After getting our insurance, I worked really hard to find new doctors and therapist for Whitney.  It seemed that everyone had long wait lists, but by they end of the year she was settled in with all her new Specialist.  We took a break from feeding therapy though.  

I started looking for a new feeding therapist in start of 2013.  It took a really long time to get in the Hospital's rehab center and to get it all approved.  Whitney was almost 3 years old by the time she saw her new feeding therapist.  Of course, during our wait, we had a lot of adjusting to do anyways.  With Thomas going to school all day, every day and me staying home with a newborn and a toddler with special needs in a new state.  Whitney was staying healthy and we were just trying to help her to actually tolerate for tube feedings and to help her not vomit 3-5 times a day.  I'm glad we took that year off of feeding therapy.  I think it helped Whitney too.  She was always very anxious around food and anything new we would do anyways.  One can never truly escape food though.  Our family still ate meals everyday at home and some times we all went out to eat.  So we just tried to be good examples to Whitney about mealtimes.  

The therapist wanted to see Whitney once a week for 30 mins, to start.  For the first month or more, Whitney cried the whole time we were there.  Eventually she learned that we were just there to have fun with food.  Through out the year, Whitney improved so much.  She learned to smell, touch, and even taste food.  Whitney would rarely eat bites but that's okay.  Overcoming oral aversions and feeding difficulties seems like the hardest thing ever, especially for a stubborn toddler.   Soon, we would see our therapist 3 times a week and Whitney enjoyed "playing with her".

But this was a 'short term facility' meaning that they had to keep on asking for extensions from the managers, doctors, and insurance for Whitney to continue her sessions there.  But in April 2014, after one year there, they had to discharge us for a while.  So I worked with Whitney at home.  I had her at least sit at the table during mealtimes/tube feedings.  I think that doing this also helped her vomit less.  I would always try to give her food to look at, smell, and even taste.  I try all kinds of incentives and rewards and make sure we have positive mealtimes.  Whitney is doing very well now and will eat a tiny bit of food a few times a day.  She is tolerating her tube feedings very well now, although she still vomits a few times a week.  (Which is sooo much better than a few times a day).  She usually vomits when she is over active after a tube feeding.  Either crying too hard or playing to hard.  

After getting accepted into CHOC's inpatient intensive feeding program, they want us to get re-establish with a feeding therapist.  So we got our Doctor to write the script and the insurance approved it.  Whitney had an eval with the occupational therapist at the facility we went to previously for feeding therapy at the end of August.  The therapist said she will see Whitney twice a week until we go to CHOC's feeding program.  We had our first session two weeks later and it went really well.  Whitney was off her pump for about 3 hours so it was time for her to eat when we got there.  She was excited to learn how to eat.  I'm going to tell her we are going to learn how to eat instead of just playing with food this time around!  Whitney ate 8 small pieces of graham cracker!!  Like not just little nibbles but legit pieces.  She also happily licked some fruit pieces and played with them.  

Our next session went well also.  She had Whitney bite on a red chewy tube, then she put pieces of graham crackers inside it and Whitney would crunch on it, getting just some crumbs at a time.  She pushed her just a little bit more and pulled back when Whitney thought she was going to throw up.  She went to the trash but didn't throw up.  She came back willingly to the table and said she needed water to help her feel better.  

So I believe that feeding therapy has helped Whitney and greatly improved her oral skills and aversions.  It's most important that the parent use what they learn and also use their instincts to best help their child.  I am grateful for all the hard work her therapist (and us) put in to helping Whitney.   I know that going to CHOC's inpatient program will help us the most!  But with out all this out-patient therapy, we may now have gotten this far.