Robby had his first grand mal seizure today at 7am. It lasted over an hour. Rob called me and I told him to just call 911.
Really scary.I want to cry but I can`t. I got to keep it together because the docs need so much info. We are on the peds unit private room because he is immunocompromised. He is sleeping on me now and we are staying over night.
The docs told Rob and I that we were lucky to have gotten this far along with no major seizures before. We are lucky and thankful, but we are also scared too. Really scared.
Maddy cannot visit because of the swine flu precautions the hospital has. My mom has her now she was scared too. We prayed, her and I as we followed the ambulance.
I wish she didn`t have to see her brother like this. I want to just hold her and tell her everything is going to be ok but I know how hard that is to even think that right now. Rob and I aren`t sure things will ever be the same now. I`ll update later.
If It Were Not For Hope The Heart Would Break
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About Me
Maddy and Robby
"Life does not have to be perfect to be wonderful." -- Annette Funicello Robby
My beautiful boy, Robby, is 8 and was born with a genetic abnormality of unknown etiology. A duplication of his Xq28 chromosome complicated with Mitochondrial deficiency Complex 1. He is considered CP with Mild Optic Atrophy, Intermittent Strabismus, Seizures and has Autism secondary to the genetic abnormalities. He uses a walker/wheelchair and MAFO's and he is learning sign language. Madison Marie
My beautiful girl. Madison is 9 and enjoys art, music and reading. She plays softball, ice hockey and soccer. She also loves to catch butterflies, and play with her friends. 
"Every child is gifted. They just unwrap their packages at different times." -- unknown 
"You've developed the strength of a draft horse while holding onto the delicacy of a daffodil ... you are the mother, advocate and protector of a child with a disability." -Lori Borgman Check me out on Facebook! |
1 comment:
Hey Cory!! I am so sorry you are going through all of this with Robby! I hope he is better and home soon!!!! Let me know if there is anything I can do. I work mon, tues,thurs, saturday this week. Take care!!
Love,
Kristin
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