Sunday, November 30, 2008

The letter L

So I was given the letter L from Lori so here it goes. I need to name 10 things that start with a letter L.

1. Lions- as my little lion



2. Lilies- one of my favorite flowers
3. Ladybugs- love them for luck

4. Ladders- which Sean wanted daddy to find the other night while we were at Portillos for dinner because he wanted a house down that was up on the shelf.
5. Little People (fisher price) Sean is obsessed with the little people

6. Lightening McQueen who as Sean would say is a REALLY FAST RACE CAR:)

7. Lucky- to have Sean and Patrick, the rest of my family, friends and all of you too
8. Live- learning to live each day to the fullest, not taking things for granted, and taking each day one day at a time
9. Love- being able to find someone to love and someone to be in love with

10. Laugh- learning to laugh, it is a great stress reliever that we all need help with, at least I do

Okay so that was harder than I thought and I am sure everyone else could think of other things or words that start with the letter L. Tell me about it. And/or if you are interested in playing let me know and I will send you a LETTER.
This was fun!

Saturday, November 29, 2008

I am thankful are you

So I know this is a few days late....but life is overwhelming and it does not stop.

I just wanted to say what I was thankful for.
I am thankful for many things in my life. This year has been a rough and emotional year. It started out with a bang and than we found out Sean suffered an in utero stroke, and once we were able to start to breathe again we found out that there is a whole in his brain, okay starting to breathe again and than we found out he is having seizures.


He has been through so much already being 7 weeks premature, having to go through tons of stuff after he came out but when we found out about the stroke he had been through a lot before he came out.

He is truly my hero and a survivor on many levels. I am thankful for every inch, kick, bite, kiss, hug, crying, temper tantrum, jumping, hitting, laughing, giggling, grinning, frowning, serious, sad, excited, overwhelmed, melt down, smiling, singing, humming, dancing, happy, mad, loving, caring, talking, running, screaming, learning, living, loving part of Sean...etc I think you get the idea. I love everything about him and thankful for everything he is. I am also thankful for my caring husband and all of the help and support he gives to me and to Sean.

No label that he has been givin- sensory issues, cerebral palsy, stroke, epilepsy, or medical diagnosis he has been giving is going to change any of it. I love him more and more every day.... and of course I am thankful for everything else in my life.

He has come a long way and will continue to succeed with the help of everyone around me and all of his therapies and therapists. PT, OT, Aquatic OT, SPT, DT.

Above is when he was first born and till now this is a true survivor and my hero.



Wednesday, November 26, 2008

Our first visit at the dentist

So today we went to see the dentist for the first time. I was way more nervous than Sean was and he did MUCH better than I thought he was going to do.

He didn't run away, cry, fight, or anything I expected him to do. He was a little social butterfly talking to all of the nurses, and charming them. Everyone loved him and couldn't believe he was 2 1/2.

They were shocked on how well he behaved. So his eye tooth and front tooth are bruised, we couldn't figure out why they were a different color, but those are the two teeth he chipped when he fell when he first started to walk.

All of his other teeth were great, and his two last molars on top are on there way in. I will be so happy once all of his teeth are finally in.

I told him that if he was a good boy we could go to target and pick out a toy. I was expected like a Disney car, or Thomas the train. No mommy I want a house.... the little people house. I told him I am not sure if they have any we will have to check.

Well we went and looked and he walked down every aisle until he found the little people house and once he did he said mommy I get this because I was good at dentist.

I said don't you want a train, or a car, no MOMMY, I WANT HOUSE. I said we don't yell or talk back. But mommy I talk back to you I talk to you. He was so confused he thought I was saying he can not talk back to me while we were talking. That is going to be an ongoing saga that is for sure.

Well we ended up getting the little people house and since we got he has not stopped playing with it. He loves the Little People and it is great for him to use his imagination and I find it so cute that he is so obsessed with playing with it.

So overall the dentist was a great experience for all of us and I am so happy it went the way it did. Now if the eye doctor goes the same way next week we will have to see...........

Thursday, November 20, 2008

the stroke- who is to blame?

Strokes And Children - The Top Ten Killer You Rarely Read About

I know this article was written earlier this year and maybe some of you have read it but I just found out. I thought it was very sad to read this, I feel Doctors should be able to recognize the symptoms and they should no age doesn't matter.

"Although strokes are among the top ten causes of death in childhood, family members and doctors often are slow to recognize the symptoms"

The guidelines are great however how do you know that they are being read, followed? He states "The guidelines will be the authoritative work on the management of pediatric strokes, and an "invaluable resource and educational tool for years to come," Biller said.

I hope he is true, but if we the family didn't know about stroke let alone an unborn child could have a stroke how do we know the doctors are thinking of it being a possibility?

Strokes can occur at any age -- even before birth. According to conservative estimates, about 3,200 strokes occur each year in youths under age 18. However where is the funding and education in trying to figure out why this is happening, why it is happening so often, and what is being done to stop it.

There is so much research on adult stroke but what about my child, other children who are having a stroke before they are born, shortly after or a few years after what is being done.

I know I am in a feisty mood today but this article isn't agreeing with me and what I am fighting for.

I know it is great that there is more news out about pediatric stroke but you can not put blame on parents not knowing the signs. Before any of us parents that found out our children had a stroke had NO CLUE it was possible. We are paying doctors to know these things.

I am thankful that we know Sean had a stroke and we can do everything in our power to help him. But what can be done to help families find out earlier because starting therapy early is key.

We started therapy at 6 months but we started because he wasn't doing things a 6 month old even though adjusted 4 months could do. We should have been sent for an MRI at that point he was not lifting his head, pushing up on his arms, and favored one side.

What we were told was he was a preemie, he needs more time to catch up, and oh he is going to be a lefty. Sean qualified for therapy thank GOD because with out we would not be where we are today.

Knowing what I know now I don't want anyone to have to go through what we are going through. How could he have gone two years of his life with out knowing he suffered a stroke?

Are doctors not wanting to think stroke? Or is it because the medical insurance is so against any type of medical procedure with out knowing why you need it. Who should the blame go to?

I personally feel it is the world we are in. I always followed my gut and mommy instinct of something was going on, I just thought it was because he was a preemie because that was what I always heard from everyone and it made sense for a little while since he did do all milestones even though they were all late. But I think to myself how could I have not done more so I could have found out earlier? Is this my fault? Is it the doctors for not being educated enough for us to have found out sooner?

Being a first time mom you always worry or at least I did, but people made me feel I was worrying to much maybe I did on some stuff but this is my child and when you feel something is wrong you need to push. I know it is anything that I caused to happen but it makes you wonder why? why did it happen to Sean? why is it happening so much? what is causing it?

Most people still don't know that you can have a stroke at any age and even before you are born because as we tell Sean's story people are still in shock. Something needs to be done anyone else want to figure out what and do it together?

Saturday, November 15, 2008

Christmas wish lists and must haves

So someone asked me to put together a list of toys that we love and Sean loves so I decided to do just that and add our wish list too.

A few must haves that Sean got last Christmas. Keep in mind a lot of things we got and wish for also help Sean with what his therapist are working on. Sorry if it is to long.

Must haves:

1. Oreo Cookie Matchin middle game. Who doesn't love oreos? This game you have to use BOTH hands to pull the cookie apartment. Not only does that help for therapy, there are different shapes inside the cookie so you can learn your shapes and match up which shapes go together. Sean loves it.

2. Baby connects- great for using both hands, by building, stacking, pulling apart and much more. We used these at therapy too.

3. Melissa and Doug Big knob puzzles. These are great for Sean's weaker side because he can do it one handed while we can hold down or distract his better hand.

4. Fisher price Piggy Bank great for working with certain hand grasps, colors, counting, hand eye coordination, this is a great toy

5. Fisher price peekaboo blocks great for grasping, stacking.

6. Step 2 Sand and Water table great for learning it is okay to get dirty and touch dry and wet sand helps with sensory touching

7. Books- Sean loves Mr Brown can moo can you (so cute), Go Dog Go, (read every night) of course Good night moon, and the classic Brown Bear Brown Bear

8. Play dough, finger paint, brushes, coloring books and crayons. Great stocking stuffer

9. Water toys, our favorites are his water drum tub time drums, bath tub letters and numbers

10. My first mega blocks Sean still plays with these over and over again.

Wish list:

1. Feed the animals fine motor games we feed the puppy at therapy it helps develop hand eye coordination, and helps fine motor skills by using the tweezers to put the food in the animals mouth.

2. Giant ABC beads helps reinforce letter recognition, colors, spelling words and much more. This can be used in many different ways for a long time. Helps with grasping and hand eye coordination too.

3. Games Games and More Games Animal Color Bingo great for listening, learning and acting another great one The Very Hungry Caterpillar or the Hungry Hungry Hippo and of course Little Einstein Memory

4. Fruit and Veggie Cut Ups another toy that can last awhile. Sean loves cutting the fruit at therapy. You can cut it our use both hands and pull it apart and both hands putting it back together:)

5. Melissa and Doug Big Knob puzzles same reason as above:)

6. Nuts and Bolts great for using both hands in both directions this one Sean loves at therapy too

7. Little People Airport- great for imaginary play

8. Therapy putty this is great for sensory and strengthening too. Sean's therapist puts treasures inside and he needs to push and push to get them out. Treasures as marbles, pennies, beads, etc.

9. Ultimate Beach Ball Sprinkler- this is great for having fun and not worry about being bare foot in the grass

10. Step 2 teeter totter great for working tummy muscles and working on balance

Thursday, November 13, 2008

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

Wednesday, November 12, 2008

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

Monday, November 10, 2008

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.