Our daughter

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Our daughter was diagnosed with Rett Syndrome April 30, 2015 just prior to her 2nd birthday. She will be 5 next month. These past 3 years have been a rollercoaster learning about her condition. Up until she was diagnosed we had never heard of Rett syndrome before and didn’t know what our future would look like. Our daughter was meeting certain milestones in a more delayed fashion. She did learn to sit on her own but, we had to have pillows behind her for support as she wouldn’t use her arms to catch herself if she lost her balance. She never did crawl or walk. By the age of 1 she was saying 6-7 words that we knew clear as day she was saying. She was learning to use a sippy cup and at this point had been eating puréed foods as well. She was also playing with toys as a typical 1 year old child would do..... fast forward 3 years.... today our daughter doesn’t do any of those things mentioned above... she is 100% dependent on someone 24/7... she lost all skills she ever gained and learned to do. She hand wrings on a constant basis, doesn’t eat puréed food anymore, she is strictly bottle fed and only drinks pediasure, she cannot sit on her own anymore even with support of pillows. She doesnt say any of the 6-7 words she used to say, although has been saying “mom” and “ya” quite frequently. She has all sorts of different equipment for activities she is doing. A piece of equipment for everything she does. Oh and did I mention, ALL the appointments we need to attend on a regular basis... Rett syndrome effects everything about our daughter. Breathing, swallowing, seizures, heart problems, low muscle tone, vision, sleep disorders, etc.. the list goes on...