Most of you already know that about 2 months ago while I was off during surgery I received Kherington's diagnosis letter from her visit with the Genetics Clinic. They diagnosed her with spastic diplegia which is a form of Cerebral Palsy. Unfortunately, we did not get the letter until about 11 months after it was sent and we did not know much about her care and therapy for the diagnosis.
Well, as a follow up we decided, with the help of her Dr., to take her to Children's Hospital and set up a treatment/therapy plan for her besides the regular help she was getting daily at School. If you don't already know, Kherington is enrolled in the Scottsbluff Public School Pre-School program and is under an IEP. This helps ensure that she receives physical therapy as part of her education and any other therapy that they feel she needs as part of her development above and beyond what normal education requirements might be.
While we were in Denver last week, she was observed by two different doctors for over two hours. During that time they decided that they did not agree with her diagnosis. They did not see anything that would make them believe that she had Cerebral Palsy. They said she had a few things that were related to clumsiness, prematurity, and extreme flexibility. One of the terms they used was hypotonia. Other than that, I have no idea what they were talking about. They said they didn't want to "label" her with Cerebral Palsy unless they were completely sure. They looked at her MRI it was completely clear, they were convinced that it was NOT Cerebral Palsy. So, although confused, I was a little relieved but not satisfied.
Yesterday, we were given the opportunity to visit the Genetics Clinic again as a follow up for her first visit a year ago. Well, what a whirlwind that was. That doctor was angry. ANGRY. He was SO upset that the Denver doctors did not want to diagnose her correctly. He showed me the specific signs of her disability, WHICH I had seen which is why I had taken her to the damn clinic in the first place. Oh man I was angry. He then proceeded to tell me that if she did not start having more severe therapy and more consistent therapy that she will be having surgery, and could possibly be wheelchair bound within 5 years. He also said that braces are a high probability right now depending on what the therapist says. However, according to Denver, she's just extremely flexible, premature, and will grow out of it...........
So. What the hell. How in the hell are you supposed to take that news?? Are you freaking kidding me right now? The surgery is heel chord surgery. Some cases are successful, some are not. My sister had it and hers was NOT a success story. Wheelchair bound in 5 years without therapy??? Braces??????? HOW DOES A DOCTOR MISS THAT!!!!!!!!!!!!!!!!!!!!!!! Ugh I am so angry right now. So she falls behind and doesn't get the help she needs because a couple of doctors who are supposed to be some of the best. They just think she is premature and will "catch up eventually". How could this happen? I can't even fathom right now what would be happening if I didn't take the time to do the follow up at the Genetics Clinic and accepted Denver's diagnosis just THINK of what would have happened?!
What a mess... what a MESS. Unbelievable. Hopefully things will start falling in to place now. She will get the help she needs and we will all move forward starting now. It is a damn good thing I have my Mother and Father there to help me recognize and fight for my daughter. Jesus help me stay calm and together. For my family and for my kids. We can do it, eventually we will get there.
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