This is my Angel who passed away, she has this rare generic disorder as well called acute necrotizing encephalopathy (ANE). If there just isn’t an answer as to why your child keeps getting sick or hospital visit with no real answer just let the Dr know about this disorder being a possibility, not many Dr know about this because its so rare so you should share it with them and they will do some research.
Don’t let strangers touch your kids because they’re cute – just put a sign saying please don’t touch germs could certainly hurt me and clip it to them & respectful decline.
For both my daughters it was about 5 months to a year they got real sick and landed them in the Hospital each time.
Here’s Anahi story on the last days. It was extremly unexpected!
We took Anahi to urgent care. After she felt ill and shaking because the fever which was pretty high at that point once we took her to urgent care they said because of her age they were limited on what they could do for her and recommended the hospital as the next step. So we took her there, poor baby trembling to even move or just to live in that moment. A hour later she would have a horrible 3 hour non stop violent seizure from there she was air evacuated to another hospital. Where later on that night her temp drops and wouldn’t move or respond anymore.
3 days later, the last brain death test was done. My wife and I knew what we had to do at that point and we just release her fully to God! My wife’s pastor in Chicago had a moment with God that the baby was looking down at us from the hospital bed and God gave her the option to come back or go home with Christ. I think my daughter just had enough of these episodes and I know she made the right choice. I knew it was her last hospital visit. She wouldn’t have any quality of life if she were to come back my baby would of been in a vegetative state if she were to be here with us.
Kids are absolutely precious every moment counts as you saw I like seeing my 4 year old smile and will do my best to be the father she needs at anytime as she grows I sing,dance with her hey it’s ok to be silly there only little once you can’t get those moment back. I will never have another moment with Anahi, she will only last in my memories. Don’t let a moment pass because we don’t have enough time in the day, life does go really fast but its how we choose to use that time for quality time for family..