Thursday, February 19, 2009

In utero stroke and how far we have come


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


17 comments:

Rachael said...

oh erin, this made me cry. i know it hasn't always been an easy road but just look at how far all of you have come in that year! and look at sean, i agree, what a hero!

Chele said...

I haven't been reading your blog all that long, however what I've read is so inspiring and I learn something new almost every time I visit. Sean is lucky to have you two as parents. All of you are strong and survivors.

Heather said...

You are a truly amazing mother just as Sean is an amazing boy. You really have come a long way! (I am new to your blog and just catching up). You are an inspiration to me. Best wishes for the future. Heather @ 3under3

Mommy07 said...

What a great post, and what a lovely family you are.Your boy is adorable and a survivor, he will continue to make U proud!!

Anonymous said...

hi erin, i was given your site by a gal that follows my son nicks site - nick too had a stroke, the day before he was born - please contact me if you so choose to, at todddeyo@sbcglobal.net or
www.caringbridge.org/visit/nicholasdeyo
take care
tanya deyo

auntynae said...

My neice dulce was born with an inutero stroke. she is now taking treatment at north carolina hbot treatments. hyper baric oxygen treatment which we have gain the ability to smile from. other then that you should count your blessings. god has had his hands on you. Dulce is unable to speak, eat or walk. they say she will never have this ablility. she alos has cpod, and cp. i am moved to see that there are other mothers like my sister. she strugles and gets depressed but im am happy to see you are holding up so well. be blessed and may god take care of you and bring you much farther!!!

Ellen said...

Erin, hi. Sean IS doing so well! He has been through so much in his young life, but he REALLY is coming along. May he never stop amazing you.

Amy Lynn said...

This is a very sweet post. Your son sounds like such a trouper, and you sound like a fabulous mother. I am amazed at the strength your family has!

Anonymous said...

I stumbled onto your site and was feeling it all over again...my daughter had a stroke in utero and started having seizures at 2 months old "infantile spasms" here is her website:www.madeleinegracehamm07.blogspot.com

She had a hemispherectomy at 9 months old...she is seizure free and off all meds. God Bless

lisa said...

Hi Erin

I read your posting and completely understand what you have and what you are going through.
My son was weeks premature and we thought everything was okay until i noticed he wasn't using his right hand. At 9 months, he was diagnosed as a right hemiplegic.
He is now 3.5 years old nad doing well; he can walk (still loses his balance sometimes), although he still doesn't use his right hand like I wish he would! but that's something I am working on every single day. His speech is also behind, but again, that's another daily task to work on.
I wish you the best wtih sean and completely know what you face!!!

lisa said...

Hi Erin

I read your posting and completely understand what you have and what you are going through.
My son was weeks premature and we thought everything was okay until i noticed he wasn't using his right hand. At 9 months, he was diagnosed as a right hemiplegic.
He is now 3.5 years old nad doing well; he can walk (still loses his balance sometimes), although he still doesn't use his right hand like I wish he would! but that's something I am working on every single day. His speech is also behind, but again, that's another daily task to work on.
I wish you the best wtih sean and completely know what you face!!!

Rompel said...

God Bless you and your son.

Anonymous said...

Erin,
I was googling childhood seizures due to in utero stroke and cam eacross your blog. My son, ben was also diagnosed with in utero stroke and had his first seizure on Sunday 3/7/2010. It was the scariest moment of my life. Ben too is with the early intervention program and now I feel lost. Ben is 2 1/2 and has gone through way more than he should at his little age. he is so smart and funny and I hope this anti seizure meds he is taking does not alter that for long

VĂ­ctor said...

PLEASE KINDLY READ MY MESSAGE:
I am writing from Spain. I have a baby girl that was born this 30 March 2010. She suffered a severe anemia at about my 34 th week of pregnancy, there was a fetus-maternal transfusion through the placenta and doctors do not know why. The doctor proceded with an emergency cesarean because they found liquid inside he little lungs which wasn´t detected earlier! We were both very healthy throughout the pregnancy!
This anemia leaded to a fetal hydrops (she was born completetly swelled up with water. All this problems have derivated to an hipoxia that generated 2 brain strokes, one at the front brain cortex zone and a bigger one at the occipital... Please can you send me information related to this ?? I am so glad I have found your blog since I keep researching in both Spanish and english web sites for information. Can I send you a private email? MANY THANKS.

Anonymous said...

I just came across your blog and wanted to share some positive and hopeful info with you. I am the mother of a 12 year old daughter who was diagnosed with having an in utero stroke when she began suddenly having seizures at the age of 8. After numerous tests, they found that the likely cause was due to having this fetal stroke, which caused cysts in her brain, as well as mild cp. After several years of trying to find the right seizure meds (especially through puberty), we are finally at a place where she is stable!! Although she has many medical issues and struggles with physical issues, she is a beautiful, bright, A student, with many friends and is involved in many school activities and sports. Having two kids with special needs can be extremely challenging but always focusing on the positive and remembering it can always be worse, has helped us all through this journey. Hang in there and take care... j

cialis said...

Hi, well be sensible, well-all described

Anonymous said...

Hi. I was reading your blog and wanted to invite you to join (MISS) Moms of Infant Stroke Survivors on facebook, if you haven't already. Please also feel free to add any other MISSes you know. Hope to see you there!

http://www.facebook.com/home.php?sk=group_122984791109944&ap=1