Development Update: Feeding

How.Do.I.Begin???

This is, by far, the most frustrating area with Nate.  At 28 months old we are feeding him like a 5 month old.  Feeding issues are common with Down Syndrome, but this seems to be far beyond the common issues seen.  For many months we tried to feed Nate simple foods like yogurt, applesauce and pureed foods.  At first, with very smooth foods, it went fine.  But as we started to introduce more texture (like mashed banana or yogurt with rice cereal), the challenges began.  Nate.would.SCREAM.  It was awful!

We tested him for sensory issues, but that is not the problem - in fact, he loves feeling all different kinds of textures - his favorite books are "touch and feel".  We also did a swallow study where they died his food and watched it go down through x-ray cameras.  Nothing was found there.  So, we needed to assume that this was a battle of the wills and he was capable of handling the food we gave him.  So, we started pushing harder.  Just enduring his screaming and crocodile tears.  It broke my heart and became a very difficult way to start each day.  Cody began begging me to not feed him. 

 

A couple of months ago, I'd had it!  He was losing weight and I had lost all patience.  So, I started feeding him smoothies exclusively.  We both needed a break.  Peace was restored in our home and I had a peace of mind knowing Nate was getting everything he needed in my blended concoctions (my favorite: banana, avocado, mango, almond butter, rice cereal and almond milk).  So, we gave him 4 or 5 smoothies a day and still did bottles at nap and bed time.  

Then, in the beginning of April, we went to our ENT for Nate to have tubes put in his ears and adenoids out.  She asked about his congestion and the rattling sounds coming from his chest.  I told her it's pretty much his normal and she asked if he'd ever been tested for reflux.  NO.  hmmmm, really?  He's never spit up or thrown up, but the doc explained that he could have silent reflux and not actually show any symptoms.  Great!

While he was under during his procedures, she suctioned gunk out of his lungs and was able to definitively say that he does have reflux.  Are you kidding me?  He's over 2 years old and I'm just now learning this?  What?!  

Our ENT recommended we get another swallow study done at the Children's Hospital.  Our previous study had been done at our local hospital which does not specialize in pediatrics - lesson learned!  This test showed something very clearly.  Nate was able to swallow fluids (juice) and thicker liquids (smoothie) just fine, but when the food was thickened slightly (yogurt with rice cereal - just a little pasty) he had problems.  The first swallow of a bite went down, but the leftovers just swashed around in his nasal passages and throat.  So, if we were to add another bite to that scenario, it's clear why he would begin to panic.  He felt like he was suffocating!  The speech therapist conducting the test said it's "muscular dis-coordination" and that it SHOULD resolve eventually.

So, where are we now?  Still mostly doing smoothies and bottles and a little overwhelmed.  We have gone all the way back to the beginning of feeding him baby food.  We'll very gradually thicken his food and if he cries at all, we are supposed to pull back - just let him lead us.

This could be a.very.long.road!

 If you have any ideas or resources, we'd be open!
Thanks,
Danielle

Next update:  Communication