|When my son was born, he was diagnosed with Coffin Sirus Syndrome. Some of the symptoms he presents are hypo-tone, severe difficulties with eating, sucking, swallowing, oral aversion, speech and developmental delays in all areas.
We were at the hospital for 21/2 months in the NICU. While we were there, he was fed with a nasogastric tube. Then, the GI Doctor put a G- tube on his stomach and he was feed for several years with a pump machine through the G- tube.
At the age of 3 months, he started therapy in three main areas, Speech, Occupational therapy and Physical therapy.
In speech, the therapist start working on his aversion through oro- facial stretches which over time, it decreased significantly. They also work with feeding, introducing at the beginning different consistencies and over time different food textures.
In Occupational therapy, the therapist worked on self recognizing on a mirror, shifting weight from one side to another, to help improve his overall muscular tone.
In Physical therapy they worked with him on balance, endurance of body overall muscular tone and coordination. They also provide him with orthopedic boots to correct the position of his feet.
Over the years, my son has continued his therapies in all three areas and everyone that see him or knows him, know how far away he has come.
He is able to walk independently by himself, get up and down a curve with precaution, get down from a car with little or no assistance and we are still working on endurance, balance and coordination. He is practicing endurance and coordination with an adaptive tricycle.
In Speech, he is able to eat different verities of food, switching from Gerber food, or puree consistency to homemade food, which we blended, and we are gradually increasing the textures. We are also working on chewing to eventually transfer him to solid foods.
In Occupational therapy they are working on potty training, self feeding, gross and fine motor skills like cutting paper, scribbling, grasping little objects and putting them in the proper container, puzzles, etc.I am deeply thankful for all the services and therapies your agency has provided to my son. It’s because of them, that he has achieved many goals, close gaps and become more independent. It has also given us hope and make us believe that everything with effort from both sides, consistency, and practice is possible.