That was what our fabulous pulmonologist asked me when we were discussing Adeline's feeding therapy. Somehow we got on the topic when I had her in during her virus last week. After seeing that she had lost three pounds, I guess I was pretty focused on how many calories we should be packing in her on a daily basis.
I can't express to you how wonderful Dr. Chidekel is to my family. He has come to know us pretty well and understands our stressful circumstances stemming from Alex's job in Dallas. Dr. Chidekel knows how I operate and does a very good job of accomodating my need to know while trying not to tear me up or stress me out in the process.
During our conversation last week he said, "There are two things you need to accept. Adeline is going to always be small and she is NEVER going to like to eat!" I kind of blew him off with the eating and started questioning him on heights. He entertained me with his typical humor but helped me understand that she is a premature twin, which in his experience, always means short. Okay, I can deal with that. I actually like that she is so tiny now. We'll see how I feel about it in five years.
Dr. Chidekel every so delicately re focused the conversation on feeding. He asked me how "pushing" food on Adeline is going. I told him meals are the worst time of day for me and they make me cranky in all of two minutes. He then posed the question that lingers in my head, "Any how is that working for you?" I responded, "Do I have a choice? Adeline would starve if I didn't force food on her by tricking her toys and all sorts of distractions." He then pointed out the following:
Pediasure was meant to sustain her
Who cares if she drinks from a bottle - she doesn't
When she does care, she will be older and more able take responsibility for her intake
Is it a big deal if she drinks two servings of Pediasure throughout her childhood?
Food is a bit repulsive to her, it isn't her fault, it was caused by all of the crap she underwent it the NICU and. . . IT IS NEVER GOING TO CHANGE!
Feed her what she will eat because we are lucky she likes things like yogurt, chicken nuggets and bars.
The therapy should come later on when she has to worry about fitting in at the school lunch table, restaurants and at other people's dinner table. The therapy should be for her confidence not for her intake.
Obviously, the above was biased but he was operating under "full disclosure" as he has a son who has a moderate form of Dysphagia. He has worked through all of the above and seen that children are wired to be Dysphagic and that sensory/neurological piece can never really be changed. Thus, it is more about helping them to meet their caloric needs while fitting in with their everyday life. I should be trying to take the stress level down, not amp it up by trying to get Adeline to eat a piece of food that makes her want to yack!
Is it hard raising a Dysphagic kid? Absolutely, frustrating and infuriating at times. Is it worse to be the Dysphagic one? Most likely but we aren't there yet. Dr. Chidekel opened my eyes to what is ahead for us. Food is such a part of our culture. We celebrate with it and mourn with it. Adeline will do neither but need to find away to not make herself feel ostracized. I guess that is where I am going to put my focus.
We are dropping feeding therapy, going back on two bottles of Pediasure a day and offering her what we are having for dinner. If she wants it great, if not she can munch on cheerios. Chicken nuggets and whole milk yogurt will be well stocked in this house from now on.
