Friday, March 27, 2009

A Kick In The Gut

I don't know if I am coming out of some denial that I thought I was over or if this is just another round of reality slapping me in the face but either way I feel like I have been kicked in the gut. As I had previously posted Anna's Early Intervention occupational therapist has been so pleased with Anna's progress. They are going to reevaluate her next month and they felt like she would not even need their services anymore except for possibly speech. Kenneth and I were overjoyed. We felt like we had somehow escaped most of the ill effects of CP and that it looked like our child was going to be free of the signs of CP by the age of 2. We knew the condition would never go away but we thought her case was so light that it would be undetected by most. However, over the past few months I had been noticing that Anna's left foot was turning in- not like a pigeon toe but more like a club foot. The turning if her foot was also causing her leg to sort of bow. Not like a bow legged person- this was all just from the knee down. I had just watched it and thought I was probably just the mother watching too closely and I let it go. I said something to my MIL about it and she actually said she had noticed it to but was not sure how to approach me about it. I decided that it probably should be evaluated so after some searching I found a pediatric OT in Denton at a place called Hope Pediatric Therapy. I made a consultation appointment and took Anna on Wednesday. It was such a neat place and I felt very comfortable there. Anna cried and held on to me when we got there and then at the end she cried because she had so much fun she didn't want to leave. The OT's name is Ana and she was so very kind and caring. She grew up with a sister who had CP so she really understands what we are going through on a lot of levels. Her opinion of Anna's needs was so different than that of the state paid therapist. She feels like Anna really needs intensive therapy for all that is going on with her. She said that if we don't begin to work on things now they may effect the way she learns to read, write ,and eventually even drive. She said Anna has something called an Asymmetrical Tonic Neck Reflex among other reflexes that should be gone by now but are not. She noted problems with Anna's high tone (stiffness) throughout her body. She said we need to take her to an orthopedist about her feet and legs. She was appalled that EI was going to discharge us in light of all she saw that needs work. She is happy to help Anna or to make suggestions if we chose to go somewhere else. We will go back to her on Thursday for Anna's formal evaluation and set up her therapy then. I am upset on so many levels. First off that I ignored my instincts- I should know better by now. Second, that it feels a bit like we are back at square one. Third, that I feel somewhat betrayed by EI who was supposed to help us and keep us going in the right direction. Don't get me wrong, they have helped a lot and I am still grateful for that but I feel like they have really led us astray. What if I was just one of those people who blindly trusted and didn't question- how high of a price would Anna have to pay later in life for that? I should have known better than to trust a state run agency in the first place. And last, I am sad that the "dream" Kenneth and I shared of this "healing" of Anna's CP has been shattered. I want to scream and cry all over again but I know it will not help. My distrust of the medical community continues to grow and I am becoming at times ashamed to be a part of it. Anna's DAFO arrived today. She has the Jumpstart Kangaroo in pink. She wore it for about 1/2 an hour today and did good with it. She did seem to walk better and fall down less. I only ordered the left one to start with but after seeing the improvement I need to order the right one also. I will try to get some pictures tomorrow of her with it on so you can see. Well, I am all typed out and I need to go to bed because she is still getting up 2-3 times a night and tonight is my night to get up with her. Goodnight all...


  1. I'm so sorry.

    I wouldn't say let your dream die. Anna is still very young. The difference that can be made with intensive therapy at this age is incredible.

    Personally I would wait to order the other AFO until after you see the ped ortho. From my experience, the custom made (with the casting and all of that jazz) are worth the longer wait to get them and their increased cost.

  2. I agree whole heartedly with your friend Maureen here. Don't let your dream die. Anna is so LUCKY to have you for a mama!
    I promise you I TOTALLY understand where your coming from! Jaidyn was booted out of IE at 2 because they thought there was nothing further to treat. My a$$. I struggled to get her another eval. that the state faught me on! Can you believe that?!
    Continue to keep fighting and do everything you can for Anna. Your dream will not die!! I promise!
    With love, Jenn (your parallel life sister in Colorado ;o)