Addyson Grace Bingham medical

Addyson Grace was born July 20,2011 . Our pregnancy with her was a challenge to say the least. First she want to come early so bed rest then when it was save for her to come Addyson lungs was taking their time to mature . So at 38wks and 4day Miss Addyson was born everything seem to be going great we thought but she was having blue spell when we would feed her .The doctor told us we had nothing to worry about it happen with some baby they don't have their eat breathe swallow down at first. No big deal right (we fount out 3 years later why she was having this trouble). We took our baby girl home thinking she was a healthy to soon realize we was going to be fighting a battle for the rest of our lives. When Addyson was 2 weeks old she had her first Grandma seizure and stopped breathing on us (thank goodness my husband was home to help) that was out first of many ER trips over the next few months seeing doctor after doctors about her seizures bc the was coming more and more . Then in February 7 mos after the first one we meet a ER doctor that was not giving up or sending us home he told me mom we are sending you up stair and you will get answer ... And we did this was Addyson first EEG they hooked her up for 24 hrs we meet the on call and she told us she was going to go look real quick at it we was 12hrs in she came back and gave us the new no parent wants to hear she said well after looking at the first 12 hrs your daughter is seizing she has already had 48 seizure in 12 hrs we only seen 3 with our eyes .. She gave us the diagnosis of complex epilepsy we started our first med. So for the next 3 year we tire all kinds of meds and she had VNS ( vagus nerve stimulator) nothing worked she was losing weight and was thought we was at the end of our time with her. Then is April of 2015 Addyson had a seizure at school last 45mins . with this hospital stay we fount out Addyson was born without a flap to hold down stomach acid and she ended up having to have a g tube placement of feeding tube and we had to cut part of her stomach to make her a flap to hold down the stomach acid. She has been putting on weight slowly .. In June of 2015 Addyson and I went on one of medical trip to Miami Children's hospital and got the diagnosis of Dravet syndrome. Since then we have tried new meds and lot of different types of therapy to try to help ... Why are we putting this GOFUNDME together is bc we need to go back to Miami for more testing and to help with everyday cost of taking care of her and her needs. Taking care of her is hard on our family of 5 .. If you could share with family friends and donate if you can it would help our family out a great deal but most of all pray for our family and the situation that one day there will be a cure a no child and family have to live like this