Home from Baltimore 2 month feeding therapy rehab

I can't believe we have been home for 3 months!  The first month home was more difficult that I imagined.

I now see why many people relapse after intensive therapy.  You think why would or could that happen after all that you worked for and sacrificed?  The truth is, it is hard to return to normal life and have so many variables enter in after you have been living in a controlled successful environment working on nothing else.

The first day we were flying back on the airplane and had to do a feeding session in front of everyone at the airport with crying and defiance.  It was stressful on everyone but we did it and got through it.  Everyone was so so so happy to be home.  We had a huge appreciation for our car, our beds, the grocery store, our friends and everything about being home.  Each of us was changed and full of gratitude.

We all worked hard at continuing what we learned.  Transitioning is hard.  School eating and strict protocol was a difficult transition.  The teachers, staff and friends were all very supportive.  He relapsed terribly for the first two weeks.  I was there every day. The environment was overstimulating and he wanted to see if he could go back to his normal behavior.  It made it tough on us as parents because we had to be extra disciplined to not let things slip in the slightest or he would push to see just how far he could slide.

We held cooking play dates with a few friends.

We went to birthday parties and actually ate!

The mind blower was the trip to the dentist!  It was the first time he didn't throw up or have to be sedated for a cleaning exam.

Slowly things started working again and then he sprang forward trying new foods.  See the video.  I was so hopeful and even thought we were making great progress and could re-introduce him into the regular cafeteria with his friends.

Then, he relapsed again and started refusing food at school and home.

We have modified his rewards and have to adjust with him.  It is not over for a long while.  It is hard to see others that have gone through the program completely eliminate their need for their feeding tubes when we are in the midst of a tough relapse.  I know we can get though it and the excitement from the new things like eating out at restaurants without fear of vomiting is so very exciting.  We feel more confident to travel and live our lives without confining ourselves to "safe" environments.

So for those other families struggling out there with children with intense feeding issues, I say hang in there and celebrate every bite.  I am thankful for the g-tube and it's life saving services and happy that my boy now can enjoy some of the pleasures of social eating.

Bring on the birthday parties!