Great news....not only has the second year of preschool started for Nate, but we have a new therapist working with us. I've been thinking about my meeting with C, a feeding specialist from Children's Hospital, and I've let everything sink in.
Didi and I took LJ there yesterday and were quickly impressed with a lot of new information C shared with us. First she examined LJ's body. She noticed a curvature of his spine that correlates with the location of his first surgery incision on the opposite side of his abdomen. C said this wasn't normal and indicated that Lew is really weak in this part of his torso causing his posture to be slumped over. When he is slumped over it makes his stomach squash down with his intestines making for an unpleasant digestive experience.
This hasn't been helping his retching syndrome any. Without the ability to sit upright and push his shoulders back he will also never be able to bring his shoulders back, thereby making it easier for him to bring both hands together, hold things, and bring them to his face. C also said that there is no way he will have the motivation to eat orally unless we can build up his strength so much so that he can hold the thoracic spine up all on his own. We've been instructed not to really use the Bumbo chair as it encourages the wrong back muscles for LJ. She gave us some side stretches to work on with him and some abdominal strengthening ideas including a sample of dyson, an adhesive material that helps keep LJ from scooching out his floor sitter and feeding chairs. Once he is physically in a better place, he will feel all that much better and be ready to work on oral feeding skills.
After feeling frustrated that we have been promoting these oral aversions and wasting the last seven months of therapy I realized a friend had spoken very true words to me. You can't look backwards. You can only go forward. Because we've all got nothing to lose and everything to gain. And you never really know what lies ahead. Today or tomorrow.
Josh and Jenn, it's been too long since we checked in with you, and the improvement in LJ, so obvious in the video clip, touches me deeply, His beautiful, intelligent face, and the way he is aware of everything the person touching him with the yellow marker is doing and the way he is savoring the attention bespeak countless hours of loving care and attention from parents, grandparents, aunts, uncles. He is masterfully attended by the most loving family he could ever want--it's all there in his face. Thank you Josh for checking in with us. We will email you soon. Paul is hunting chukkas in Saskatchewan and will be back in a week. xo,Carol
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