Do you remember, I can not believe we are almost at our 1 year anniversary of finding out Sean suffered an in-utero stroke, has closed lip schizencephaly aka a whole in his brain, the seizures epilepsy, the right side hemiparesis cerebral palsy, the sensory issues and much much more, and some stuff we still do not know.
Here is my original post March 1st, 2008 talking about our story, coming here to vent, cry, show frustration, and break down. How could my baby my unborn baby have a STROKE? Yes you read that right I wrote that then and I still right that now. So many people, doctors, and the society still do not know that no matter the age how young, how old STROKE can affect you. While I am still an emotional mess, Sean, Patrick, and I have come a long way from where we were.
Sean started with going to therapy through Early Intervention we went to physical therapy, occupational therapy, aquatic occupational therapy, speech therapy, and developmental therapy.
Now that he just turned 3 he started the Early Childhood Special Education program in our school district and is getting therapy privately through our insurance too. He gets occupational therapy, speech therapy, and social skills, behavior, coping and sensory help all at school. He gets occupational therapy and aquatic occupational therapy through our insurance on top of what he gets from school. So he still keeps us VERY busy. But I love Sean, we love Sean and will do what ever we need to to make his life better, him better, and him to be a happy boy.
We are very blessed to have Sean and I know GOD only gives people what they can handle and from the beginning we new how strong and what a fighter Sean truly was.
The neurologist thinks Sean's stroke happened in my first trimester because of his brain not developing correctly during brain development which is why he has a hole in his brain. He is also suffering from seizures. Complex partial seizures and if you saw some of my recent posts he is starting to have them again:( Although we are adjusting his Trileptal and hopefully that is all Sean needs for them to stop. I can not put him through another EEG it was hard on all of us, but we will if we have to.
Sean seizures are happening in the temporal lobe, and frontal lobe, and his seizure happened in the parietal lobe and the aka "hole" in his brain is affecting all three.
Sean amazes us daily, weekly, all of the time. The things he thinks of, the things he says, the things he does. He can count to 18 now, knows his entire alphabet by recognition, his shapes, colors and so much more. I know there are a lot of difficulties he has and goes through but I truly feel there is nothing he can not do, and I will never let anyone tell me he will NEVER do something because that is not true. Some of the things he has already done are amazing and I know he will continue to do more and more things that will amazes us and hopefully some of you too. I know that things may be harder for him than most but we have learned to go at his pace and love every moment of it.
I know we are not quite at the actual anniversary yet we are close enough and I have been thinking about a lot of this and a lot of things lately and wanted to get it out here!
Sean will have a life long diagnosis but he is a survivor, and my hero and I am glad that I have become friends and met a lot of you. You all have made this easier on me and my family.
We had some answers and just needed to learn more about what those answers meant which lead to more and new questions which some are still not answered and some may never be.
Cheers to a new year, with lots of new joys, new tears, new ideas, new friends, new meetings, new awareness, and new me. I am going to try and be less of a worrier and more of an optimist and learn to live each day to the fullest and embrace everything and not worry what could go wrong but live with what we have and show everyone in my life how much they mean to me.
Thanks and much love
Erin