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


Wednesday, February 18, 2009

Kidz a Connection for Inspiration

I came across the most amazing and wonderful website for parents of children with special needs. It is so inspirational and wonderful you all need to go check it out and add it to the blogs you keep up with and read.

Not only is it a wonderful heart warming blog, you can actually win stuff for yourself or your little one!



So please go read and or share your story!

She is trying to raise awareness about special needs and special kids. Thanks!

Tuesday, February 17, 2009

Seizures Seizures go away

So we had Sean's follow up visit with the pediatric neurologist yesterday and we were waiting and waiting for the doctor to come in. He was behind and we were playing. Once the doctor came in he was talking to me and interacting with Sean.

Asking me question after question and Sean was laughing, smiling, playing and all of a sudden he is completely quiet no noise no sounds and the neurologist was saying Sean, Sean, SEAN, and I was too. He was out of it, his mouth moving like he was chewing something, and he was trying to pick like lint or something off his clothes even though nothing was there.

He had a seizure in front of me and the neurologist, I am beyond scared because after it happened he had a emotional breakdown, he was hysterical, tired, and just not himself. I am not concerned all of those meltdowns he has had maybe he had a seizure before them?

I mentioned to the neurologist that I thought last week he may have had one but I just thought no we haven't had any in so long and he just started school, the theratogs, and other changes.

The doctor is upping his meds a little bit and if he has another one we will decide if we need to do another EEG. I am hoping this will help and we won't have to torture him with another EEG.

Please say a prayer that he only had those two seizures because he was not getting enough meds and not that the whole in his brain is the cause.

Saturday, February 14, 2009

Katherine Klosets Mini Chalk Mat Giveaway

Do you have a child who has everything yet nothing seems to entertain them in a restaurant while you are trying to eat. Or when you need a few extra minutes to do something. You have come to the right place.

Check out Katherine's Kloset to check them out but also check out The Shopping Mama http://theshoppingmama.blogspot.com/ who is holding a contest and giving away a free mini chalk mat.

Katherine's Kloset has a variety of great things some of my favorites and things you should check out are. The Chalk Mat and Crayon Roll Ups the polka dot is one of my favs. You can buy them together or buy them separately but they are both a MUST have.

Another favorite of mine is the matching bib and burp clothes how could a mama not those to match. We all no how many bibs, burp clothes we go through give these ones a try and they are reversible too.


The next is the most adorable tutu I have ever seen it is the Little Princess Tutu which every little girl needs (can't wait to have a girl someday myself) Not sure Sean would look to good in this.

There are so many great things that Katherine's Kloset offers you must go check her out yourselves. But please also check out the Shopping Mama Blog to enter to win the Chalk Mat yourself too. I also have a link to Katherine's Kloset Blog on the blogs I check out stop by there too.

Friday, February 13, 2009

We are in Chicago Special Parent Spring Magazine

I am so excited. I found out Sean's picture will be in the Chicago Special Parent Spring Magazine, a copy is being mailed to me today and the public gets it in about 7-10 days. I am beyond excited.
A couple of things I mentioned about being a special need parent made it in too. I AM SO EXCITED if you can not tell:)

I will post more when I actually get the magazine but here is what is out there now:)

How we do it- Share your best tips or advice for raising a child with special needs.

"MY BEST tips and/or advice is to raise your child with love, compassion and patience. Having a child with special needs is just a label to me. To me, my child is the strongest little boy I know and he makes me stronger each day.
"I know he will accomplish great things and do everything and anything other little boys do. All you can do is let them try to do things and most of the time I am amazed on how quickly and easily he figures out how to do them."

Erin XXX

This is the picture they are using:) or one very close to this. I sent it in a long time ago and they only print twice a year so I am super super super excited!


Wednesday, February 11, 2009

1st Day of school, 1st day on the school bus

So life has flown by and it is crazy my little baby boy is truly a big boy now. Not only is he 3, he also started the Early Childhood Special Education Preschool this week.

Our first day was on Monday I brought him there and stayed with him the whole time. He played with purple play dough and rolling pins, and heart cookie cutters for Valentines day, played on the computer, decorated his Valentines day party bag while using glue sticks and stickers.

He got to enjoy reading time with the librarian, music time, snack time, and gym. He got to go to circle time, wasn't to sure of it at first but then they gave him a sensory cube chair and put his felt star on it. He sat and listened and did not fidget to much. Sean's symbol in the class is the yellow star. So his name is on everything with the yellow star so he knows where to hang his coat, put his bag, where is name is, and his spot at circle time is.

He also got to go to gym when I was there where they all go to ride trikes, bikes, big wheels, cars, and wagons. He loved it. He rode a trike a green one:) The first day Sean barely spoke at all just pointed to things.

Every time I left the room he cried which was to be expected. We came home and tried to take a nap but he wouldn't. We then had our 3 year old check up at the doc. He is 37 inches and 37 lbs. He grew 2 inches since 6 months ago but weighs the same. He did well

On Tuesday it was our first day going to our neighbors who is helping us put Sean on the bus in the morning. We played and than I helped put him on the bus. We climbed on and he was excited they put his safety vest on and buckled him in. Sean looks at me as says mommy you sit by me and come too. I melted, holding back the tears I said I can't because only boys and girls get to ride the bus. He began to cry and they had me get off the bus. He cried almost the whole way to school. I cried too.

Yesterday at school he did great the teacher said but today went much smoother all around. This morning at our neighbors he asked for me a couple of times but didn't cry when she said mommy had to go to work. He went and played with her kids which helped. He than got on the bus and he said wheres mommy and cried a little bit but didn't cry the whole ride today.

I picked him up from school and they said he is doing great he really warmed up and was talking non stop:)

Tomorrow is his Valentines day party and they suggested a parent come if they can to the party Patrick is going to go since I have to work. So overall it has been a great transition.

I will say he is so tired from school at daycare he runs when it is nap time to go to sleep and he can barely stay awake after 7 in the evening. He told me he loves school and his new friends it is so sweet.

Here are some pictures enjoy:)
First day before we left
Walking to the bus
Sitting on the bus

His Bus







Saturday, February 7, 2009

HAPPY 3RD BIRTHDAY SEAN update with pics

I can not believe my baby is now a big boy and 3 years OLD. Time sure does fly by. Happy 3rd Birthday to the most amazing little boy in the world who is a hero, fighter and true survivor. Sean you have had to go through way to much in your life so far from being a preemie, suffering a stroke, having a whole in your brain, to the seizures, to the cp, all of the therapy, and everything else in between.

We are so blessed to have you and love you so much. I was trying to take a picture of the theratogs on Sean. We got the pants put on yesterday, but Ms Sarah put them on today I put them on and I guess not 100% right because he wet his diaper and his theratogs:) Daddy is taking him to see Mrs. Jenny today and she is going to show him again. While my mom takes me to the doc about my cyst today. The joy, I want this rock out of me.:)

Here is a blast from the past!

Just born








1st Birthday!




2nd Birthday!




3rd Birthday (more to come too)!








Thursday, February 5, 2009

Most Pain Ever

So I am in so MUCH pain, I went to the ER today because I had back labor type pains and it hurt to urinate.

Sure enough I have a kidney stone. Not only do I have a kidney stone on the right side I also have an ovarian cyst on my right side too.

No wonder why I am in SO MUCH pain.

Thank goodness for pain meds


Please please pray that I pass this stone before Sean's party. It is on Sunday. I was told that it is as much pain as giving labor.

Monday, February 2, 2009

Emotional Month that just begun

So February is an emotional month for me for many reasons.

The first in being Sean was born 7 weeks early almost 3 years ago.

The second is a year ago this month we found out Sean suffered an INUTERO Stroke

The third is my little man is going to be 3, where did the time go

The fourth is his Early Intervention therapy will be ending. This week two more of his therapies will stop.

The fifth is next Monday Sean starts his first preschool, my little guy will be taking a bus to a big boy school to start the Early Childhood Special Education program

Oh at to those waiting with me we are still waiting to hear back from AHA/ASA about Lobby Day, so please keep your fingers crossed with me.