We are finally in the works of getting a communication board for Ammon. Last week I met with people from the district who had already come and observed Ammon in his classroom and felt he would benefit from a board for both at school and at home. They are fairly small boards with only 6 options for speaking a desired phrase. For example one board will be prepared for when he wants to eat. He pushes the picture of a snack (cracker) and it speaks! "I want a snack.' We tried this at school with him and he got the hang of it really quick. Every time he pushed it he was handed a cracker. I'm interested to see if he will use it for other things like..."I'm tired." or "I'm hurt" The board has sheets with pictures that slide into it. Then there is the option to record a voice and make a statement for the picture. They showed me how to use it. I will be working with the speech therapist to make as many sheets as we want/need. Really fun! She asked me to not record my voice but a child's voice for "Ammon's voice." I love that idea!
Sunday night I was attempting to settle him down and get him to sleep. I tried telling him a story. The story of his birth and how I felt when I held him for the first time. He avoids eye contact like the plague and rolls back and forth as I speak. I want a moment in his world so desperately. I started singing to him. He stopped and finally looked up at me into my eyes. Why is language such a barrier? What does it sound like in his mind? Music is the only way I feel that language really makes sense to him. I stopped and he lay there gazing at me and then made an attempt to tell me something in his jabber. I was ecstatic to hear him attempt to communicate and pretended to understand everything he was "saying". I am hanging on to hope that this communication board will empower him with a voice.
Mi nombre es Vanessa vivo en Quito Ecuador, tengo un bebé de 8 meses, que se parece al tuyo, todavía no saben que sindrome tiene, porfavor escribeme, de verdad te lo agradeceré.....escribeme
ReplyDeleteHello Vanessa,
DeleteThank you for writing to me. Ammon has a syndrome called FGS3 syndrome. Another name for it is Opitz-Kaveggia syndrome.
Can you tell me more about your son? I would love to help you in anyway.
Hola gracias por responder, cuando Gabriel nació no podía succionar (alimentarse normalmente), era como si se durmiera siempre que le tocaba comer, así que yo me sacaba la leche y se la daba por biberón para asegurarme que coma, sinembargo se le regaba por los lados..............visite muchos pediatras, pero decían que yo exaageraba y que él no tenía hambre, empezó a bajar de peso, hasta que un doctor al escuchar su corazón determino que tenía un PCA o soplo cardiáco, debido a su bajo peso no había como operarlo. los doctores decidieron ponerle una sonda por gastrostomía (un tubo en su estomago) para alimentarlo, porq descubrieron que le faltaba musculatura en el maxilar inferior, además mediante una prueba se determinó que tenía reflujo severo..eso fue cuando mi hijo tenía cuatro meses.
DeleteEl 7 de julio le operaron del corazón, todo salío bien;ha ido a diferentes doctores para recibir terapia de deglución, sinembargo en vez de mejorar a empeorado, en el sentido de que aunque su musculatura facial es ya la correcta, él no quiere abrir la boca... he probado todos los alimentos posibles, pero no quiere comer.
Es por este tema de la alimentación, junto a sus rasgos faciales que nos enviaron a un genetista.
DeleteDisculpa que te escriba en español, mi inglés no es bueno.
El genetista le realizó un exámen llamado caryotipo (para ver su número de cromosomas)y salio "Bien". pero devido a sus características faciales, criptorquidea, problema cardiáco (ya solucionado, orejas de implantación baja y retraso motor (porque hasta ahora parece que mental no es)sospechan de un sindrome.....En mi país la génetica no es muy desarrollada, por eso estamos desesperados, queremos con mi esposo ayudarlo y determinar que es
Hello Vanessa,
DeleteI am sorry for all you have been through to help your beautiful little boy. I know how discouraging it can be to turn to Doctors for help only to be turned away. I am glad he has a feeding tube. I hope it will help him gain weight and I hope he is recovering well from the heart surgery. Ammon had a hard time eating food as well, but never needed a feeding tube. I think you are amazing for all you have done to help your son. I hope you are doing alright with your son's condition. I thought my heart would break when I realized Ammon had difficulties. It has taken me a long time to find peace. It has taken me a lot of prayer to find peace with the way things are. I wanted him to be healed so badly. I know now that he is blessing our family and me in so many ways. God loves Ammon and me and will help us find the answers and help we need.
Your son sounds a lot like Ammon.I hope you are able to look up FGS3(opitz-Kaveggia) syndrome on the internet. There is no blood test right now to know for sure but you can look at all the symptoms and see if your little boy has them. He seems to have a lot of the symptoms. I hope you keep in touch and let me know how he is doing and how you are doing.