We have been home now for four days and so far no fevers. She did have a slight runny nose and we continued the abuterol for two days. It is nice not having to fight with the treatments anymore. On a different note, I did talk to another parent that has 17q. She lives in MA and her son will be 14 this year. He has had cardiac surgeries which I feel very fortunate that we do not have to go through that. She also said that he never had any seizures. Also, he walked at age three and talked at five. He started school at age seven but did not do well academically. He struggled strongly in reading and basic math concepts. In sixth grade he started going to a special needs school and he is making progress. He is now in 8th grade and he can add and subtract and has a first grade reading level. I ask her the million dollar question and that was where did she see him in ten years. She responded by saying "still at home but we have looked into group and assisted living for his future". She did invite me to meet them when I make it out east sometime and she would like to meet Eva.
When I talk to other parents it is a reality check. I feel sorry for other parents that have to go through with this disorder. I know that I am one of them but because I live day to day I don't think that I want to face the reality that will eventually come my way. I will just continue to work through every problem as it comes and find other sources that will be beneficial for her. For now - I will continue to watch Nemo :)
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