|Posted on February 11, 2017 at 5:15 AM|
It's the end of Feeding Tube Awareness Week 2017 which means another year has passed since Bella had her feeding tube removed (nearly 2 years ago now). For us this week is also a time to reflect on our time with the tube, what we have been through and think about how far we've come since. We still have absolutely no regrets whatsoever about having had the feeding tube or the timing that we got it removed. (We did about a year ago wonder if we had made the wrong decision by getting it out when we did as she has been touch and go with failure to thrive at times).
So how are we traveling these days? Bella still drinks her elemental formula twice a day (morning and night). This supplements her food intake which alone will not meet nutrition and vitamin needs. This is due to her multiple anaphylaxis allergies (milk, egg, fish, chicken) and her EoE triggers (wheat, soy, peanut, corn) and many food aversions. Due to her current medications that have been helping keep her EoE symptoms more under control she is currently trialling some corn (as an ingredient at this stage, not whole corn products). That has opened a few exciting new food options for her and we’ve also seen a huge increase in recent times in the quantity and variety of allergy friendly foods available! A massive difference that is for sure to what it was like 12 years ago when we began on this journey.
An ongoing battle for us and one that we have tried to get help with again last year but have had to put on hold until she is ready is that she most likely also has Avoidant / Restrictive Food Intake Disorder (ARFID). It never used to have a name for it when she was younger!
But for now, we are celebrating the steps we’ve taken already and are thankful that she still has her Cheerleading to guarantee a smile on her face!