Annebelle was born a perfectly healthy baby girl. She was 9 pounds 2 ounces and 41 weeks gestation with an uneventful delivery. We spent the usual couple days in the hospital post birth and then took her home. For four blissful days I was a mother of two amazing, healthy kids.
The day after leaving the hospital we took Annie into the emergency room because she had not eaten for over 8 hours. We were there for hours and saw multiple doctors, nurses and techs before a labor and delivery nurse came down to place her IV and immediately noticed that she was having neonatal seizures. Her pediatrician was called in and she was transferred to a children's hospital. That was the day that my entire life changed.
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I can't believe our website is finally coming together! I have been putting it off for quite some time because I wasn't sure how I wanted to do it. I knew I didn't want it to be just a blog but I did want a section to hep talk about different aspects our our life. I also wanted to use it as a tool to help spread our message. I am so happy with how it turned out and I love that parents can come here and learn all about each one of Annebelle's diagnosis. Being a parent of a newly-diagnosed child is terrifying and I hope that our website helps those parents cope with this new life.
The beginning of this journey is full of sorrow and worry and guilt, if you're just starting you might feel like this will always be the case. It won't. I couldn't imagine my life with Annebelle any other way. We celebrate holidays and birthday, go to the park, eat meals and read books, we just do it a little bit differently. Annebelle is very smart, even with her epilepsy regressing her development, her cerebral palsy messing with her motor function and damage in her brain, she knows whats up. I watch her play and figure out new toys and I can see here gears working. Her brain wants to do things every other two year old does her body just isn't quite there yet. The hardest part of Annie's disabilities is not knowing the future, there is not book to tell me when she'll hit milestones or what her adult life will look like. The more I accept that the easier it gets. I hope this website helps other parents navigate life with disabilities and see how amazing these kiddos are. |
My name is Katie and this is my mini me Annie, follow our cerebral palsy adventure.
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August 2018
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