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Discouraging Decision

Submitted by kim on Tue, 07/29/2014 - 20:42 in Nathaniel's Story

I made a very hard decision today to discontinue all of Nathaniel's oral feeding. He is aspirating. I have know something was wrong for months. I have grown increasingly frustrated with oral feeds which most days produce coughing fits and increased suctioning needs. Often the coughing spells end in vomiting. His occupational therapist was aware of the problems. She spent half her weekly therapy session on feeding. Her solution was that the more he ate, the more he would get over his 'gag' sensitivity. I felt like I was getting no answers to my growing concerns and decided to get a second opinion.

Nathaniel had a new occupational therapy evaluation today. All his feeding behaviors scream, "I'm aspirating!" Today's OT advised discontinuing all oral feeds immediately. I called Nathaniel's ENT office to share her observations and they confirmed. No oral feeds. Tests are needed.

I feel an odd combination of frustration with the therapist who has been monitoring this activity, sadness, and concern about what this new development means for Nathaniel. Until I can get a clear diagnoses as to why he is aspirating (anatomical? neurological?) and therapy help towards a solution, the risk is too great. I have so many questions. How long will it be before we can try food again? Will he forget what we have worked on?

The most difficult part is that Nathaniel wants to eat now. He wants our food. He reaches for and tries everything. Even the sauerkraut off my Reuben sandwich last weekend at a cafe. Our year of working on oral feeding has achieved what it should have achieved! But something is not right on the inside. This could mean a good thing - that his airway is opening up perhaps? It could mean he loses all motivation to eat. Tonight it is just a full plate of unknowns.

Reality is sinking in while I type. Something we have worked on very hard three times a day for a year - getting Nathaniel to eat - stops abruptly tomorrow. I will not put him in his high chair at eight in the morning and play all those funny "please eat" games. I will not see that sweet smile when he sees pears or when I pinch off a bit of my blueberry muffin and hand it to him. We will not have our daily my-nose-needs-wiped-but-mom-is-letting-me-sit-on-the-counter-and-eat-my-cookie moment before stories and nap. I had not realized until tonight how much we have incorporated Nathaniel into the social aspects of eating and family time around the table. Rituals that became routine his first day home will change tomorrow.

A set back. I am trying hard not to dwell in feelings of discouragement. I know the Lord sees, cares for, and protects my children. The hunch He gave me to not accept the answers I was getting and the therapists' second opinion today is part of that protection. I can only assume Nathaniel will eat again and I know when he is ready, God will give us the patience and endurance to help him through the learning process again. Again. At the moment,  I am just sad that he will have to do this all again.