Avleigh has always been that child that truly enjoyed food. When she would eat you could see the love in her eyes and she would smack her lips with pure satisfaction. It has been over a year since she has been able to have food by mouth. By this time it was thought that she would have forgotten what food was like, especially for a child with a neurological disorder. What no one was expecting is that she still remembers! She will move her lips around when she sees someone eating. I occasionally would give her a little taste on the tip of my finger (not enough to cause issues) and she would just light up! Over these last few months she has shown so much progress. She has gotten stronger and even gaining some head control. With this I pushed for another swallow study in hopes to get her to eat again.
This past week the swallow study took place. She does still have difficulty of most consistencies. She had aspiration with the honey, traces of penetration of thin forms and normal transit with nectar and pudding consistencies. With this her feeds will have to continue through j-tube, BUT we have the green light to work with her pleasure foods! This mean that she still can’t have a meal by mouth, but she can have tastes of food here and there as long as we have her in a proper position and allow sufficient time between bites. We will begin working with a therapist for feeding therapy in hopes that she continue to progress in this area as well.
This is great news for her and us! Lets all face it… living in the south everything revolves around food! Now when we have family/friend gatherings or having dinner at a restaurant she can be somewhat included by having small tastes of food. This will keep her heart happy!
Avleigh's Journey 
Leave a comment