On Thursday the 20th, I took Ella to an evaluation at Kauri Sue. We met up with a great friend of ours Kimberly Butterfield, Kimberly was very sweet and helped me watch Brayden as we had Ella evaluated by a nurse. The nurse asked all about her history and my history during pregnancy. Nurse did an evaluation on her eyes and Ella did a great job following the lights. Ella than had a hearing test and passed her right ear, but her left only passed partially. The tech said that sometimes when babies do not pass, that it could be fluid caused by an infection.
Ella will be re tested on October 1st.
We were told that Kauri Sue will do physical therapy at our home every other week till Ella reaches 3 years old. At that time Ella will bus to Kauri Sue to learn things.
Ella has a lot of help and we are hoping with all the help she has that we can get passed the DWS and show that she can live beyond the learning disabilities.
I have had a few people say that DWS is not a disability. I have thought about this the last few days, and this is what I have to say about that.
Dandy Walker Syndrome symptoms vary from child to child. DWS could show, but never have a symptom. The symptoms that do show can go from slow learning, slow at developing, slow at crawling and walking. Or it could go to the extreme of being in a wheel chair and never being able to do things When people say that our children that have DWS is not a disability. They are wrong, no one will ever understand what you have to go through on a daily basis with a DWS child. Ella may have low symptoms as of right now, and we may have to watch her close over the next year. She could just have the fluid on her brain and no symptoms. Or over a course of the year she could develop problems that could require more help or even surgery. The disability she has is that she cant learn like a normal child. I can suggested if anyone wants more information to do research on it.
People can sit back and say its not that bad. To that I say be in our footsteps. Since Ella has been born, I have had at least 1 appointment to take her to. Last week we had 5 appointments. Every day, every two hours we work with Ella. Teaching her to hold her head up strong, by doing this it is going to help Ella strengthen her muscles. Ella has low muscle tone and she needs the extra help to allow her to do things like we do. We are also trying to teach her how to roll on her sides which we do this every 2 hours everyday. Ella is slowly learning from all the exercises but she still has a lot to go.
We know a lot of people dont understand and they dont know the meaning of DWS so they dont understand what we are going through. Please research it!!!! The more people that know, the more we can try and find a cure for this. DWS children deserve to have a normal life like us. and I will make sure our sweet Ella is able to be just like us.
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