National Epilepsy Awareness Month

Is National Epilepsy Awareness Month

What is Epilepsy?

Epilepsy is a neurological condition that from time to time produces brief disturbances in the normal electrical functions of the brain. Normal brain function is made possible by millions of tiny electrical charges passing between nerve cells in the brain and to all parts of the body. When someone has epilepsy, this normal pattern may be interrupted by intermittent bursts of electrical energy that are much more intense than usual. They may affect a person's consciousness, bodily movements or sensations for a short time.

Sean suffers complex partial seizures please sign the petition for him and many others.

Thanks, just click on the link below!

http://www.epilepsyfoundation.org/petition/index.cfm

After our meeting with the school

I feel much better after meeting with the school. I got to learn a lot about what the process is and how it works. I still have to say it is very hard for parents who work to be able to take advantage of this process.

But they believe Sean would qualify of course we have to do an evaluation and that is in January so it is still a little less than two months away. But based on his medical history and what we talked about and discussed they don't see why he couldn't qualify.

Qualifying is not my biggest concern, my biggest concern is how to make it work with us having to work. There is a bus and they explained how there is a driver and another adult present at all times and how they get picked up and dropped off. So the bus is one option but I am not totally comfortable with that.

The other is the preschool we are on the wait list for is in another suburb but since it has elementary grade levels it is consider a private school at the district it is located in maybe able to offer us therapy. We are trying to figure it all out.

The school he could go to in our district and city would be 4-5 days a week for 2.5 hours and I thought we could go get him during our lunch break and bring him to his daycare for the rest of the day but that would lunch break everyday. He doesn't have to go to there school m-f so maybe some days would work?

So we need to fill out a huge packet and go from here. We have a lot of choices to make over the next few weeks and months. It is hard because we know he needs the services now we just need to find away to make the services work. I wish I knew someone who could drop him off in the morning it starts at 9:05.... ugh ugh ugh

Lots to think about but I am very happy that my sil went with me to help explain things to me and take notes. I know it will work out some how it is just so hard to figure out what to do and how to make it the best for Sean.

more later

What does this mean

So I just read Sarah's blog and it really fired me up. I was already fired up about the meeting with the school this Wednesday night about Sean already but after reading what she went through brought my biggest fears to reality.

I work, Patrick works I just don't know how working parents can do it. We both work Mon-Friday, no time to start late, end early it just doesn't work like that.

Sean did not pick to be special or require special care but the fact is he NEEDS it. My SIL used to be a special ed teacher and she got us a copy of what they should be able to do at a certain age for that district and it is so black and white. It doesn't matter if you can do something even if it is the wrong way of doing it or you only use one side of your body to do it they mark you off as being able to do it.

That is a bunch of CRAP. How can my child go from receiving 5 therapies a week to the limited 60 visits we get privately through our insurance. And if he qualifies for services through the school they are only open 4 days a week for 2.5 hours. I guess I will find out all of the rest of the details on Wednesday night but I feel it is going to be a long hard tough battle. A battle I am not willing to lose but what can one do if they have to work five days a week....more to come on Wednesday night.

Happy Halloween

Hope everyone had a wonderful Halloween. Sean had lots of fun this year, I just wished he would stop and smile for the camera. Here are a few shots and a few old ones too:)

2007 when I had a little clown

2006 when I had a little froggy

Stroke Walk 2008 BIG STEPS FOR BABY STROKES

So the walk was yesterday and it was a great day. It started off a little cold but ended up being a nice day for a walk. We had tons of people come out and support our team and as you can see to the right how much our team raised.

Sean got a red cap for being a survivor and so did my dad. Sean also signed the survivor wall it was so precious.

I am so proud of everyone involved and I know all of us will truly make a difference. Next year we get our own tent how awesome is that. I hope next year to even raise more money and more awareness.

Next year hopefully we will be able to get some corporate sponsors, and pediatric stroke awareness pamphlets too.

Our team shirts looked awesome as well. I hope to make more awareness through out this next year and to get more people involved and on our team to help make a difference. It just sucks because when I send info the media or newspaper NO ONE responds. How do you get them to respond?

I know there are many people out there who care and right stories about our precious little ones so that is what matters as long as there is awareness and people are listening it doesn't matter if it is my story or someone elses. I just want to make sure NO ONE else has to go through what we and many others are and have gone through.

Again THANK YOU to all of you who sponsered Sean and TEAM BIG STEPS FOR BABY STROKES.

An emotional meaning about the name Sean

So I looked up the meaning of Sean online today out of curiosity what it says the meaning was and as I read what the meaning was I started to tear up.

As you read it you may very well especially if you know our story.

Here is the meaning of Sean- Irish variant of John: God is gracious; and a gift from God.

A gift from God is where I began to get emotional. I know God is us only what we can handle and I know God selected Sean for us and Sean is truly a gift.

But it really brings to home about God only giving us what we can handle and God picks special people for special babies.

I heard that over and over again after Sean was born early and than finding out about the stroke, the seizures, the schizenphally, and everything else it really has a different meaning to me.

God gave us Sean because he knew we could handle it and love him for everything he currently is and will be.

Please SIGN Petition for Preemies

Please sign the petition for Preemies. As a preemie mom I know how much it would help to find out why this is happening.

Sean when he was born:

http://www.marchofdimes.com/padpetition/index.aspx?a=1&z=1&c=1

Petition for Preemies
1. We urge the federal government to increase support for prematurity-related research and data collection as recommended by the Institute of Medicine and the Surgeon General’s Conference on the Prevention of Preterm Birth, to:
(a) identify the causes of premature birth;
(b) test strategies for prevention;
(c) improve the care, treatment and outcomes of preterm infants;
(d) and better define and track the problem of premature birth.
2. We urge federal and state policymakers to expand access to health coverage for women of childbearing age and to support smoking cessation programs as part of maternity care.
3. We call on hospitals and health care professionals to voluntarily assess c-sections and inductions that occur prior to 39 weeks gestation to ensure consistency with professional guidelines.
4. We call on businesses to create workplaces that support maternal and infant health.

Thanks