Easter 2014
New Skills...
New Favorite Outdoor Activity
The lining up of his favorite objects... Yet another sign
The first five months of this year has certainly flown by...
Several months ago Luke's doctor ordered some blood work for genetics. This time the results showed a microdeletion. "An approximately 413 kb loss of 4q25 was detected". Deletions in the fourth chromosome typically go along with cardiac arrhythmia syndrome. We had a 2 day EKG. Luke's heart is completely normal and he has no arrhythmia (Praise God!).
On May 20th, Marty and I took Luke to Mobile to see a genetics doctor. This doctor was amazing. For the first time, we met with a specialist who didn't view Luke's disability as something negative. Most would kind of scratch their head and talk about Luke's "dysmorphic traits". This doctor said that Luke is unique, as are many children with genetic disabilities. He didn't have any answers, and that is completely ok. He recommended that Marty and I have some genetic blood work done to see if the genetic issue runs in the family.
So, there is no specific diagnosis. I am thinking that their never will be one. I guess the information we have is ok in order to get Luke on the APD waiting list for services after he is 22. The problem we are faced with is that Luke needs services now. He already receives speech/language therapy, occupational therapy, and physical therapy. One therapy that he desperately needs is ABA therapy. In order for insurance to cover this therapy, Luke needs and autism spectrum disorder diagnosis. This is where I have met resistance. I have a personal relationship with his doctor. This doctor does not want to give this diagnosis. This is sad because Luke cannot receive the therapy he needs as a result of this. So, now I will have to push. I don't want to, but I am Luke's advocate first. I need to do what it takes for him to receive this therapy. God help me.
No comments:
Post a Comment