We are still on continues feeds, switching G-tube feeds during the day to J- tube feeds at night. Jenny manages her G- tube feedings in the day well but every time I try to feed her gastric over night she will start gagging and I have to decompress and stop her feeds for some time. Our feeding therapy is no different then when we started. Jenny loves to play with food and brings it to her mouth, enjoys the taste and smell of it but is not swallowing much if any. I am hopeful that she will improve but Im aware that this can take a very long time. We are thankful that Jenny is doing so well right now considering all she went through over the last months. Another issue we are dealing with is her mobility and her balance/focusing especially when she is tired or not feeling her best. Jenny will fall and often she will catch herself with her hands but she has taken many serious spills which caused her injuries from chipping her chin and teeth to biting her lip and gums to the point that I was afraid we need stitches.....Jenny has no fear and loves her independency which can get her very upset at times when I have to pick her up to protect her from getting hurt, especially walking downhill. This is when Jenny has no control over her balance and her walk turns into running within the first steps she takes and if I dont scoop her up immediately she will fall right on her face.....also when she walks for a period of time her energy level drops from one second to the next which Jenny cant seem to figure out. She will fall and pick herself up and fall again....this continues until I pick her up. Communication has become more and more of a challenge as well. As Jenny is getting older and more independent not to forget very strong willed we encounter many tamper tantrums as she cant express what she wants. Her tantrums and crying cause her choking which make everything including disciplining very complex. We are working on sign language but she is not using it yet. Jenny will only copy signs from her I pad while she watches them or copy me when I sign with her. This also requires much patience and persistence. Her body language is very good and Im able to figure (much) I think of what she wants. Jenny will be starting school this fall when she turns three years old. We are getting a wheel chair fitted for her so she can learn to maneuver around when she cant balance herself. We are also getting a bathtub chair which reclines fitted which will free me up a little when giving her a bath as we are outgrowing the little baby bathtub.
Posted on: Tue, 08 Jul 2014 04:11:20 +0000
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