Hi.

Welcome to my blog. I write about life as a Christian wife, mother of eight children, and grandmother.

Enjoy.

Discouraging Decision

Discouraging Decision

I made a very hard decision to discontinue all of Nathaniel's oral feeding today. He is aspirating.

I have know something was wrong most of this last year. Nathaniel's occupational therapist through early intervention has spent half her weekly therapy session on oral feeding. It always causes coughing fits and increased suctioning needs. Often the coughing spells end in vomiting. The occupational therapist solution: the more he eats, the better chance he will get over his gag sensitivity no longer makes sense.

Nathaniel had a new occupational therapy evaluation today with a private therapy group. I was told that all his feeding behaviors scream, "I'm aspirating!" The OT advised discontinuing all oral feeds immediately. I called Nathaniel's ENT and Pulmonologist's office to share the therapist's observations and everyone agrees. Discontinue all oral feeds immediately. 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. Our daily my-nose-needs-wiped-but-mom-is-letting-me-sit-on-the-counter-and-eat-my-cookie moment before stories and nap will need replaced with something new. 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 need altered 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 eating is safe, 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.

Augmented Communication Part 3 - A talker

A Friend to Comfort

0