Oh, she still has a feeding tube?

Yes, Lydia still has a feeding tube.  It's the last major obstacle, we think.  How I wish we could just take it out and she'd eat.  How I wish every time she asks for food she'd eat it and not just play with it or taste it and spit it out.  The good news is, she's healthy and growing and maintaining her weight through the winter.  The bad news is, she is still 100% dependent on a feeding tube for nutrition.

In December we started seeing a feeding therapist that has experience in weaning children off of the feeding tube.  We did water trials to determine if Lydia knew she was hungry.  Basically we withheld all of her tube feedings for 3 days and only gave her water to determine if her body and brain would start signaling hunger and to see if she would consume any food orally.  Well it worked.  She eventually showed signs of hunger, started to realize she was hungry and swallow more bites.  When I say bites I mean a few to maybe a half dozen pea size bites, at best.

Then she starting dropping weight and got sick because we did this in the middle of winter.  Lydia doesn't gain weight in the winter, she gains in the spring and summer.  Lydia is only in the 1st percentile for weight so we don't have a lot of wiggle room when it comes to dropping weight.  Her dietitian and I decided to pause, keep her as healthy and nourished as possible over the winter and wait for the 30 pound mark.  We have about 3 pounds to go.  

The water trials are really to get her circadian rhythm back in action.  She's tube fed on a schedule and is fed possibly more than what she would eat if she was sitting down eating hot dogs and macaroni and cheese.  By giving her only the water to keep her hydrated, we are trying to ignite her brain and those signals.  Your circadian rhythm is basically a 24-hour internal clock that is running in the background of your brain.  It influences sleep-wake cycles, hormone release and ... ... ... eating habits and digestion.

I'm taking the month of March and maybe April, since March is already half gone, to research tube weaning, methods, mysteries, trials, successes, heart aches, setbacks.  You name it!  If it's about tube weaning children I'm going to find it and read it.  There are very few programs worldwide out there to support this.  When is say a few I mean quite literally that there are 3 well known programs that I have been able to find.  

Doctors care about getting children to heal, grow, recover, survive.  Feeding tubes do a phenomenal job in aiding all of that and making nutrition a reality.  Doctors don't so much care about weaning off the tube.  Doctors save lives.  Feeding tubes play a role in that.  Feeding tube dependency seems like a relatively new idea and the idea of weaning off of the tube an even newer one.

That's where we are.  Lydia sits down to breakfast, lunch, dinner and a couple of snack times each day.  She gets all the same food at preschool that the other children get.  She has snacks at the ready in the pantry.  The opportunity is there.  The interest is there.  The timing just needs to be right.  Dan and I and Lydia's dietitian believe it's soon. Stay tuned.