We had MRI last week and I am still waiting for the result. I will probably make an appointment so I can sit with Dr. Graf and see what else we can do since the last three result that I had didn't really give me an answer at all. Although his EEG has improve a lot which we probably all expected. Dr. Graf said that all the seizure activity that he had from his EEG occurs when he was sleeping. The nurses told me that maybe the next thing will be a 72 hour home EEG and a sleep test since Tony's is very poor. That is also a 72 hour sleep test. This are just suggestion to me by Dr Graf's nurse. She told me the result since Dr Graf was with another kid. I stopped by there after our MRI last week. The Genetic test that they did few months ago came out negative. They don't even have anything to start of the diagnoses. He is also negative from angelman syndrome. I don't know anymore. I just want an answer.
Tony's 4 now and dont have any diagnoses. It's breaking my heart everyday. Somewhere in me I can feel Tony wanting to be just like other kids. I can see the look in his eyes when he's with other children running around him, he will follow them with his eyes and giggles and stop. He likes to play with other kids but he is so limited and sometimes when he would suddenly stop gigglin, I feel like he's wondering why he can't be like them. I don't want to feel sorry for Tony but I do and I really wish I can do something or someone can. I am very very sad with my son's situation. I think I am going to need more therapy to accept our situation than him or I'm just gonna be broken hearted for the rest of my life. SAD
On top of this all, Tony's appointment, my appointment, the struggling with emotions, government system issues, racing with insurance time for equipment and me not having able to make an income and my own health issues, on top of all this Tony and I are hanging on. I don't know how but we do. It's not the easiest thing to deal on earth but someone has to do it. We will live and we will survive.
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