One of Avery's biggest accomplishments this year has been her rapidly developing oral motor skill. She usually has 5 bolus feeds through her feeding tube each day, but recently we've been dropping a bolus feed for each meal that she takes by mouth. Her ability to tolerate textures has dramatically increased, so we have been able to diversify her food list to encompass many of the foods that best meet a child's dietary needs - macro AND micro. (I've discovered that good nutrition in childhood will troubleshoot A LOT of the struggles our kids face, cognitive and behavioral. Obviously, not all, but a good deal of classroom trouble and attitude and sleep issues can be traced back to poor diet in children!) Trying to meet those needs with a strictly puréed, almost liquid, diet has been quite the adventure.
She ate turkey and dumplings last night for dinner (mashed well) and oatmeal with cream for breakfast today, which were textures that she previously struggled to manipulate with her weak and disordered motor habits. I'm so grateful for the progress and I predict by the end of 2018, Avery will be fully weaned from all g-tube feeds. She will probably keep the tube for several more years for nutritional insurance - its WONDERFUL to have access to her stomach after surgeries or during sicknesses. We can keep her fed and hydrated in her sleep or when her appetite is low, so I'm in no hurry to permanently remove the tube! In addition, Avery still has her most serious surgery up ahead - a midface advancement that will make her unable to eat by mouth for several months. Having her tube will be a huge help during that ordeal.
The "formula" we have found most successful is Compleat Pediatric. It isn't the most natural formula we have tried, but it has been the ticket for settling Avery's stomach enough to begin to tolerate table food. She threw up constantly with every other diet we tried, and it may be coincidence, since we did another cranial vault expansion that released some compression on her right frontal lobe at the time that we introduced Compleat, but she stopped throwing up completely.
Because Avery has relied to heavily on antibiotics for much of her little life, I religiously add probiotics to her food. I've tried various powdered probiotics and I will continue to mix things up, pun intended, and incorporate different brands every few months, but here are a few of the brands that we like.
Before she was able to consistently tolerate food orally, I mixed the probiotics into her formula to be delivered through her tube. Since she's eating so much now, I add it to her yogurt or oatmeal each morning.
She is not sensitive to dairy, so I have not taken that in to account when picking her probiotic, but if your child is, you may want to read the ingredient list very carefully! Some brands (like Flora) include dairy in their powder and you may find that the probiotic actually increases congestion in a sensitive child.
I wish I could conclude this post with all my sure-fire tips and tricks for magical speech and feeding improvement, but alas, the only thing I can hopefully impart to you is HOPE that all of your effort will not be wasted. Avery is almost 3 and we're rejoicing over OATMEAL! It's a long process, but so well worth it - like anything worth achieving, anything worth fighting for. So, whatever it is that you're working toward, whether feeding a child by mouth or finishing your masters or improving a relationship, know that baby steps are progress - being faithful to do the little, seemingly insignificant things, every day will one day add up to REAL, measurable change. Don't give up. Flush your timeline. Even if it's taking forever, you still have time. You can do this.