Today was a very anticipated doctor’s visit for my daughter. The purpose of the appointment was to determine whether or not she was ready to have the feeding tube she has depended on for six years to be removed.
It turns out that she lost a little more than a pound and half since we stopped tube feeding nearly three months ago causing her to fall off her growth curve. Given this development we will not be removing the feeding tube but we will also not be resuming tube feedings. Instead we chose a middle of the road option – we will try to increase her caloric intake for the next month by offering her high calorie drinks. If her weight holds we will resume discussion about removing the tube.
This setback reminds just how far both Caroline and I have come. The thought of developing a plan to remove the tube seemed unimaginable only a year ago and here we are working out the details. Caroline has improved her eating skills so much it makes me so proud. Eating was the first and biggest challenge Caroline faced and she is overcoming it every day. When Caroline’s medical team realized that she had a decline in weight since we stopped providing nutrition through the g-tube their immediate response was, “We have to get her weight back up, let’s resume the tube feeds.” But I didn’t agree with that plan. I think Caroline is ready or close to ready to be free of her feeding tube. So instead of blindly accepted these respected medical opinions, I discussed options with the team and we came up the plan I shared earlier.
When I think back on the countless hours of feeding therapy (2 hours a week for several years) combined with the hours I spent trying to get Caroline to drink a bottle or eat food by mouth, I can’t stop the tears from welling in my eyes. Because I know how hard Caroline worked and how many challenges she had to overcome to learn to do something that comes naturally to most people. Today, she has NO food or texture aversions which is amazing for a kid on the spectrum – her challenge remains eating enough calories. Caroline is forever moving and has a fast metabolism thus she needs a lot of calories to power her little body. I am confident that we will find a way to get those calories in her body without a feeding tube soon.
We aren’t getting the feeding tube removed, today or tomorrow but we have a plan and we are moving forward. I can accept that as progress. I am also proud that I am able to view this as a minor setback opposed to something major. It is also not causing me to question Caroline’s progress rather applaud how far she has come. This mind shift has greatly improved my quality of life.
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