Wednesday, December 31, 2008

Our year in review

So I can not believe we are almost in the year of 2009. Today is the last day of 2008 and it has flown by so fast. We have had an emotional year it was quite a roller coaster. We found out about a lot of medical stuff about Sean. We found out that he suffered a stroke in utero, the epilepsy and complex partial seizures, the closed lip schiz. (whole in the brain), the right sided hemi cerebral palsy.

But we also have a lot to be grateful and thankful for. Even though Sean has been through so much and experienced to much any child his age or lifetime should have to experience....He is here and doing absolutely amazing. He amazes us daily and makes our life complete.













Happy New Year to everyone and God bless

Tuesday, December 30, 2008

40 days and counting!

So my niece was born this past weekend so I am a proud auntie again to miss Taylor Reese. She is beautiful and I love the name too.

So tomorrow is New Years Eve can you believe it is almost January of 2009. I can not. That means Sean is almost 3:(. My baby is no longer a baby but a big boy:)

Sean's 3rd birthday is only 40 days away where did the time go? I have been an emotional wreck about Sean turning 3 and not having another baby already. I know I know it would help if we actual try harder and time it, instead of just "trying"

But I am so scared of trying and everything we have been through with Sean. The 4 weeks of bed rest, him being 7 weeks early, the nicu, and nicu stay. Not being able to hold my baby for 48 hours after he was born, to not letting me have him in my room at the hospital, to have to leave the hospital with out him. For the struggles, and medical tests, procedures, dx's (the stroke, the epilepsy, the mild rh cp, the closed lip schiz., and all of the therapy. I don't know how I could handle this times two if we had too. I know we would some how some way because God only gives us what we can handle.

But what do I do. How to I overcome how scared I am? The hardest thing in my life was to leave Sean in the hospital and have to leave the maternity ward in a wheel chair with an empty car seat.

Uh the emotions.................................

On another note we still have not gotten our theratogs that were ordered um in OCTOBER! Hello where are you? Supposedly they will be here soon. We will see I GUESS!

Thursday, December 25, 2008

Hapy Holidays

So Sean was feeling better by last night and this morning was a lot of fun. I got a lot of great action and cute shots. Here is one of my favorites.

Merry Christmas and God Bless everyone!

Wednesday, December 24, 2008

Merry Barf-Mas

So I just wanted to wish everyone a very Merry Christmas and Happy Hanukkah and or Happy Holidays.

You got it we are celebrating a very Merrry Barf-Mas. Sean was up all night puking. He puked all over his bed and himself, it was even in his ears:( around midnight, clean him off, took his pj's and linens. Gave him a nice long warm bath. Got him dressed again, went into our extra bedroom and read books. As I was walking out of the room he puked again all over this bed.

Got him undressed, and cleaned again, changed clothes again. Went in the bathroom and sat there for awhile. We then went downstairs on the couch to watch some tv (Thomas the train) and cuddled in a blanket. He sure enough about to barf again. I got up and ran into the kitchen to the sink but didn't get there in time and puke was all over me and him.

Patrick came and got him undressed and cleaned up again new pj's again. I went to go change and clean up. Poor little guy. We than went back to the couch to watch more Thomas and a few mins later he had to puke but we got him into the kitchen in time and near the sink. This time he didn't get it on his pj's or us:) He than dry heaved a few times. My poor little man.

He finally stopped puking around 2:30 am I was up till 3 AM and than went to bed and Patrick woke me up at 9 this morning. I am so tired, Sean is tired, and Patrick is tired. Sean slept on the couch from about 4 am to 9 so at least he got some sleep.

This was not what I wanted for Christmas, but I know it could be worse and I am thankful and grateful for everything I have. At least it will be memorable:)

Although we won't be able to go the family parties tonight or tomorrow we can have our own family party hear with the three of us.

So HAPPY HOLIDAYS and Love to you all~

Tuesday, December 23, 2008

The Eve of Christmas Eve

So Sean and I had a wonderful day today playing together inside. It started off by waking up to eat Life. Yummy:) Than Miss Meghan came to our house today (she is Sean's Developmental Therapist) she is so nice and fun. Sean loves playing with her.

While Miss Meghan was over we were about to start a play date too. Sean's buddy Tyler came over. They played kitchen, little people, cars, Thomas, danced, ran, ate mini English muffin pizzas, apple slices and watched a video. It was a great play date. Sean went on the potty twice while Tyler was over he is becoming such a big boy.

We made peanut butter cookies yesterday and oatmeal. I am going to make choc. chip tonight. Here are a few pictures of Sean helping me make and eat:)

Monday, December 22, 2008

Twice upon a Christmas

So Sean and I are home today by ourselves since Patrick had to work. I asked Sean what he wants to do today. He gave me quiet a list.

1. Go get a bagel, (he loves bagels) we did go in our pajamas even though it is -4 degrees outside.

2. Watch movie

3. Play with baby Jesus and Little People

4. Make cookies

5. Eat cookies

6. Lightening McQueen song and dance (Gone by Sheryl Crow)

So hear we are eating our bagels, well I finished my half and he is still eating his half in our pajamas watching Twice Upon a Christmas with Mickey Mouse.

If you have not seen it I HIGHLY recommend it, it is so cute, it is about a bunch of different stories with all of the different characters. It is SUPER CUTE and well worth the PPV rental of $2.95.

Have a great day I have lots of other stuff to do with Sean on our list today:)

Sunday, December 21, 2008

Day 6 and Day 5

So I was to busy to post yesterday so I apologize. We are finishing all of our wrapping, and a few last gifts I must admit. I feel as time has flown by this year with out a lot of time to shop, wrap, and decorate.

One thing I have made extra time for is remembering and reflecting back on this year just seeing how much we have changed, how much Sean has changed.

Not only changed but how FAR he really has come. He can jump, run, skip, dance, walk up and down the stairs, go potty on the potty. He will take a bath with some bubbles, play in sand, walk on grass, go under water in the pool, can do a somersault with help of course, pump his legs on a swing, put together a puzzle, say his ABC's, colors, count to 20. He can have a conversation back and fourth with us, he loves to read and be read to, says thank you, I love you, your welcome, gives kisses, blows kisses. Loves to ride his tricycle in which he can actually reach the pedals, will climb to the top of the slide and go down all by himself. Yeah I know this is short and to the point but my little baby is now a BIG BOY. He tells us daily that he is a big boy and tonight he just showed us again by going potty on the big boy potty.

Enjoy your family as much I as I enjoy mine.

Friday, December 19, 2008

7 days Let it Snow Let it Snow Let it Snow

So since we are literally snowed in, it has been very hectic. I am still not feeling 100% but I have to work today, at least I get to work from home.

So we are started off the day on a good note, Sean woke up, we gave him a bath, he really needed one last night but with me being so sick and Patrick tired we waited till this morning.

Sean took his bath got out got dressed ate breakfast and than the temper tantrums started. He wanted me to play with him and I tried to explain I needed to work I have to make 90 calls today, yes 90 which is not easy to do with a 2 1/2 year old screaming in the back ground and a dog barking.

It has calmed down I have played a little, worked a little, and feel sick still. ugh..... I need a nap but still have to many calls to do and 4:00 can not come quick enough.

We are getting more snow and an ice storm tonight oh joy the fun in winter in the Midwest!

At least after 4 today I am off until 12-29 yeah I can not wait!

Thursday, December 18, 2008

8 days and counting

Well this is going to be a rough one today since I was sick throwing up all night I think I have the stomach flu boo hoo:( Go away go away, and please pray Sean won't get this that will suck since Christmas is almost here.

On a better note when we got home last night there was a box for Sean. He goes mommy there is a box for Sean it came from the mailbox.

So we opened it and it was the Litte People Nativity set. My mil bought it for him. He asked her the other day mama you buy me baby jesus:) It was so cute he loves it, he set it up next to his tree in his room, had to keep the tree lights on last night so he could see baby jesus:)

Wednesday, December 17, 2008

9 days of Christmas

I meant to start this at 12 days but time has just flown by. I am going to write a little something each day until Christmas.

I was searching for a poem today that talked about my life, things I am grateful for and how blessed I really am. God only gives us what we can handle.

Heaven's Very Special Child (Author Edna Massionilla, December 1981)

A meeting was held quite far from earth!
It's time again for another birth
Said the Angels to the Lord above,
'This special child will need much love.

His progress may seem very slow,
Accomplishments he may not show,
And he'll require some extra care,
From the folks he meets way down there.

He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.

So let's be careful where he's sent,
We want his life to be content.
Please, Lord, find the parents who
Will do a special job for You.

They will not realize right away,
The leading role they're asked to play,
But with this child sent from above,
Comes stronger faith and richer love.

And soon they'll know the privilege given,
In caring for this gift from Heaven,
Their precious charge, so meek and mild,
Is Heaven's very Special Child.'

This poem brought tears to my eyes. I know Sean can walk and run, but he is a Special Child to me, to Patrick, and to everyone else who loves him. He is a true fighter, survivor and hero.

Tuesday, December 16, 2008

Deals of the day

So I figured if and what deals I find I should post them here.

Today Amazon is offering a great deal on Leap Frog Fridge Phonics Magnetic Alphabet Set $8.99 they sell $25 gift cards for $10 and use discount code SANTA for 80% off

Barnes and Noble safe 25% on one item coupon code P7P7Y9N

more to come as I find them

Monday, December 8, 2008

Good and not so bad

So sorry I didn't update earlier, our weekend was crazy. After going to our appointment at 8 AM on Saturday after a 10 min car ride took almost an hour because of all of the snow and the lack of plowing so early. It took us an hour to get there, luckily I was smart and left early so I had enough time.

Before we left we had to put eye drops in Sean's eyes to dilate them, so I had to remember to bring the stroller because he wouldn't be able to walk very well and with all of the snow on the ground I didn't want him to fall.

So we arrived around 7:55 and I open Sean's door and he goes "mommy I don't walk in that, it is dirty". He has OCD and Sensory Issues and thinks snow is dirty and doesn't want to touch it and if it gets on him he screams and screams until it comes off or melts. (we are working on that, total different topic and post- Lets just say he had a meltdown because snow got on his boots earlier in the week and snow has been a nightmare since)

So I put him in the stroller and try to plow through the snow on the ground that has not been plowed and got in safely with not to much crying.

We got upstairs and waited our turn. We finally got called around 8:30 the nurse brought us back and started to show Sean some pictures on the screen and he didn't really want anything to do with what was going on. He didn't want to sit in the chair, stand on the chair, or be any where near the chair. He wobbled out of the room (he had a hard time walking from the dilated eyes)

She said lets go in the kids play room and see if we can do a few more tests. So we went to the play room and she put these funny glasses on Sean (I think 3-D) and he had to grab at the animals that were jumping out at him. Not sure if he understood how to do that? Then we went to a big bug and he immediately grabbed at the wings (like he was suppose to) so I was happy.

The nurse than told me that the doctor is running behind and is not even in the office yet but on her way and with the snow she will probably be running behind about an hour. So we put in the movie Duck Tales (cute but Sean was not that interested)

We watched the movie and than two dirty diapers later it was finally our turn. We went back in the room with the scary chair that Sean climbed into like a big boy. The doctor put the animals back on the screen and other objects. Sean started to name them off like hand, duck, cake, phone, etc. She said that he is doing good, his eyes are still the same as they were last time so they are not worse but not better.

She told us to keep an eye on him and his eyes because he is near sided, she also said she wants to wait a few more months and see if they get better. But if not we will need to do glasses and a patch but right now she wants to see if his eyes will correct themselves. That is great news but still something I have to worry about.

The worrying will never end:)

Friday, December 5, 2008

Eye Doctor Appt and other worries

So we have to take Sean to the pediatric eye doctor tomorrow morning. I am nervous because I have a feeling she is going to say we need to do the patch and glasses. I hope I am wrong because he has already had to go through and do enough already for a 2.5 year old. We have gone every six months to get his eyes checked. This past time they were a little better than the time before but still not where they need to be. Of course it is his right eye that is weaker, poor guy.

Any ideas on how I can make wearing a patch fun? I plan on incorporating pirates some how and making it fun but not sure how he will be with it. Like I said I hope we don't need them but my mommy instinct is telling me different. However I hope it is wrong. I will update after tomorrow mornings appointment.

My next worry is from what happened at 2 am in the morning/night last night this morning. Sean went to bed like normal woke up at 2 am SCREAMING HIS HEAD OFF saying "Don't take my toys away" and "I want my little people house, don't take my toys away"

I am not sure where this is coming from. He was sweating, screaming, hitting, kicking, breathing heavy. Both Patrick and I went in to his room and he told Patrick not you not you and mommy stay here with me don't leave me.

Broke daddies heart and melted mine. I sent Patrick to get a sippy cup of water to help settle down by sucking which worked but he kept crying and hyperventilating until almost 2:30, finally back asleep by 3:00 and than mommy went back to her room to try and fall back asleep.

The only thing I can think of that made this happen is that Sean fell asleep early and we had a crazy night and forgot to give him his seizure medication. I know I am the worst mommy ever for forgetting but we have so much stress in our life right now it is crazy. Stress needs its own blog:)

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!

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.

Friday, October 31, 2008

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

Monday, October 20, 2008


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.

Thursday, October 16, 2008

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.

Wednesday, October 8, 2008

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:

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.

Monday, September 29, 2008

Sensory Integration Meltdown

So something has come over my little boy and I can not figure out the trigger point. This morning was a rough morning. Patrick and I went in his room to wake him up and get ready for the day. He immediately started screaming and crying which is not normal. He usually will stretch his arms and legs and start helping us take his pajamas off.

Today was way different. As we was screaming Patrick and I try to console him and he just started kicking, hitting, and hyperventilating because he was so upset. We tried everything to calm him down and nothing was working. Between the both of us we got his pajamas off and starting to change his diaper and he screamed NO DIAPER CHANGE. Some how some of his senses were off this morning.

It took us awhile but we got his new diaper on and eventually his clothes for the day. We then proceeded to try and put his shoes and socks on. His new shoes he loves we just got that LIGHT UP. He normally is upset if we take them off.

After he was completely dressed he got down off of his bed and ran to the bathroom where I was finishing getting ready to go to work and said I love you mommy and started to quiver. It melted my heart and I was ready to have a meltdown.

I don't know what triggered his emotions this morning. I know it is sensory related because this was not a temper tantrum it reflected nothing as his normal temper tantrums do. He has done this a few times at night before bed a couple of weeks ago.

I think it is sensory because it seemed he got upset with any type of touch or expected touch. He is normally would love a kiss and hug in the morning not this morning he kicked or hit when we tried. I am emotional mess today sitting at my desk trying to figure out what happened to my little boy this morning. I wish I knew how to prevent them from happening.

We started a journal writing down what he eats, when he sleeps, wakes up each day to try and find a trigger.

Yesterday he napped normally, had a play date which he loved, and actually ate dinner.

Eating dinner these days has been a challenge. Lately he would rather play and not eat. Thanks for stopping by.

I know there are a lot of unknowns about the brain but there are a lot of unknowns I have a lot of unknowns myself but I am trying to figure this all out. I know Sean's stroke affected his parietal lobe, frontal lobe, and temporal lobe because of the closed lip schizenphally.

Monday, September 22, 2008

Turning 29 Oh my

Turning 29........ and everyone keeps telling me that I need to live it up since it is my last year in the 20's. Tell me how to live it up?

So I guess that is a little over 29 words but what else is there to tell about being 29? What have you done and loved.

Monday, September 15, 2008

The Brain and its Lobes

The brain and there functions in way I can understand and make sense of what is going on with our little guy!

Ever since we have found out that Sean suffered a stroke, has a whole in his brain, is having seizures I have been trying to figure out what lobes are effected and what each lobes function is inside the brain. Here is what I have figured out after spending tons of time on the internet.

Sean’s stroke happened in the parietal lobe and this is what I was able to find out:

It is located above the occipital lobe and behind the frontal lobe. The parietal lobe integrates sensory information from the different senses, especially spatial sense and navigation. The parietal lobe plays important roles in integrating sensory information from various parts of the body. The parietal lobes can be divided into two regions one involves sensation and perception and the other is concerned with integrating sensory input. The first function integrates sensory information to form a single perception (cognition). The second function constructs a spatial coordinate system to represent the world around us. Individuals with damage to the parietal lobe often show striking deficits, such as abnormalities in body image and spatial relations.

And of course the best part is much less is known about this lobe than the other three in the cerebrum. Great thanks. I know that there is still so much to learn about the brain. But don’t researchers and doctors know that we need to know more about all lobes but I NEED to know more about this one. My unborn baby had a stroke and it affected this lobe (well it affected three lobes…but occurred in this lobe) Okay enough said above since there is not much out there on the parietal lobe.

Let’s move to the frontal lobe. The frontal lobe is located at the front of each cerebral hemisphere and is in front of the parietal lobe and above the temporal lobe. It is separated by the primary motor cortex from the parietal lobe. So this makes sense of why the frontal lobe is affected from the stroke. The function of the frontal lobe involves the ability to recognize future consequences resulting from current actions, to choose between good and bad actions….. aka behavior. The frontal lobe are considered our emotional control center and home to our personality. The frontal lobe are involved in motor function, problem solving, spontaneity, memory, language, initiation, judgement, impulse control, and social behavior. The frontal lobe are also thought to play a part in our spatial orientation, including our body's orientation in space. This makes sense since Sean has body space issues.

The last lobe affected by the stroke and everything else is the temporal lobe. This is also where Sean is having seizures at. The temporal lobe involves speech, memory, and hearing. It is highly associated with memory skills. Seizures of the temporal lobe can have dramatic effects on an individuals personality. Temporal lobe epilepsy can cause aggressive rages. Lets hope that this is not the case for Sean.

If anyone is interested in learning more I got most of my information from the following websites.

Wednesday, September 3, 2008

What is Schizencephaly

What is schizencephaly? I get asked this all of the time because it is something Sean has. There is not much out there of what it is, why it happens, and everywhere I read it says that it is rare.

Here is the national institute of Neurological Disorders and Strokes definition:

Schizencephaly is an extremely rare developmental birth defect characterized by abnormal slits, or clefts, in the cerebral hemispheres of the brain. Babies with clefts in both hemispheres (called bilateral clefts) commonly have developmental delays, delays in speech and language skills, and problems with brain-spinal cord communication. Individuals with clefts in only one hemisphere (called unilateral clefts) are often paralyzed on one side of the body, but may have average to near-average intelligence. Individuals with schizencephaly may also have an abnormally small head, mental retardation, partial or complete paralysis, or poor muscle tone. Most will experience seizures. Some individuals may have an excessive accumulation of fluid in the brain called hydrocephalus.

My definition is of what Sean has is called closed lip schizencephaly. Basically he has an area of his brain that is not connected. The best way to describe it so everyone who understand is that he has a whole in his brain. The neurologist thinks because of the closed lip schizencephaly which means Sean's brain did not develop correctly during brain development may have been the reason Sean suffered chronic ischemic strokes while in utero.

Sean is suffering seizures he is having complex partial seizures and is currently on medication and the closed lip schizencephaly is affecting not only the parietal lobe where the stroke happened but the frontal lobe, and the temporal lobe too. He also has poor muscle tone, and goes to tons of therapy.

Wednesday, August 27, 2008

10 things to catch up

Well we have been super busy lately and I feel I have so much to catch up so I am going to talk about 10 different things that are new.
1. Neuro visit yesterday went pretty well. He thinks Sean has sensory integration (sp) issues and we are going to start DT to help with behavioral and social skills. Cognitively he is ahead of where he should be:) So my little guy is VERY SMART:)

2. Sean can count to 3 in Spanish uno dos tres not only is he smart but bilingual. He counted the three little bears in Good Night Moon

3. We got to meet Sarah and Avery and Amanda and Leah this past Sunday. They are both so cute and amazing. We got to meet the daddies too.

Avery, Leah, and Sean at the stroke picnic

4. Sean had his 2.5 year old check up and is 36 inches and 35 lbs, big boy for a former preemie

5. Sean jumped and played hopscotch tonight

6. We went and spent the day out with Thomas not to long ago and Sean loved it. He got to ride on the Thomas train and get a PERCY and THOMAS tattoo

7. Sean's favorite book right now is From Head to Toe and acting out all of the actions

8. Sean was so tired tonight he was falling asleep during dinner but still wanted to play with Thomas instead of going to sleep.

9. Sean is finally warming up to Vitus and interacting with him better

10. My body hurts from working out the last couple of days. So at least I know I used some new muscles:)

Sean decided to give Avery a hug

Tuesday, August 12, 2008

TheraTogs, Ortho Inserts, and Sensory Brushes

So we had Sean's reassessment meeting last night. He is doing rather well he is still a few months behind in most areas and mostly because of the right sided hemi. cp. and his low muscle tone and strength in his hips and stomach. He is also in toeing still with his right side and is fisting a lot while doing harder things again.

So Sean is going to start to where theratogs 24 hours a day when we get them. We won't get them for a month or so because it goes through EI to order them. It will be interesting to see how he is while we try and put him in this. Here is a picture and a link to there website.

Enhances proprioceptive input by automatically providing joint compression through the torso and hips.

Adds postural and hip stability without strapping.

Simplifies the TheraTogs donning and doffing process for patients who only need to address issues of stability, balance, and staggering gait caused by ataxia.

We also need to address his sensory issues and we are starting the sensory therapressure brushing idea with deep brushing of arms, legs, hands, back, feet.

And last but not least we have flat feet and in toeing so we need to put in
orthopedic inserts basically these big blue things in his shoes. I don't have a picture of them and can not remember what brand they are ordering him but then we need to go to stride rite and by him a new pair of shoes. Hopefully we will find some that fit with the inserts because he already is wearing an extra wide shoe.
Tonight a developmental therapist is coming to verify and reassess Sean to make sure they did not miss anything. Wish us luck with accomplishing that. Sean has been a typical two year old these days with lots of No's, mine's, and no mommy or daddy you bad. Not sure where he got that from because we don't say you bad. We say we don't do that we play nice. 2 years can't live with them but can't live with out them either.

Friday, August 8, 2008

Design Contest

{this may not be much of a "contest" if no one is interested, but i thought i'd give it a shot anyway}

Ok, so the American Heart Association's Heart Walk is fast approaching (hard to believe!). Last year, Sarah's talented friend Judy created there logo and t-shirt design. BUT...she just had a new baby and she's a wee bit swamped with the whole new-baby-craziness and I doubt she'd want to complicate life even more by taking on a design project.

So... anyone interested in putting their design skills to work for a great cause? My friend/co-captain Sarah and I thought we'd put feelers out to everyone "artsy" we know, get a pool of designs to choose from, and {walah!}--a beautiful logo to print on shirts for the walk!

And what do YOU get out of it (besides fabulous karma)?? A prime real estate spot on the back of our shirts! Yeah, that may not be much, but a picture's worth a thousand words right? Tons of people are bound to see your business logo at the walk. I mean, we've already got nearly 20 people on our team who will be wearing the shirts, plus ALL the people who attend the walk (like 40,000 or something?!). (And if that's still not enough, if you're local and want a fantastic golf eval, let me know--I'll throw that in courtesy of R--hey, it's a $175-value!)So if this sounds like something you'd want to help us out with, here are the deets:
  • Team name: Big Steps for Baby Strokes

  • T-shirt color: Purple with yellow lettering (to match the wristbands)

  • Dimensions: Doesn't really matter; but we just need one main logo/design that would go on the front of the shirt (logos of local businesses who support us will go on the back)

  • Special note: We will also need a different, yet similar design for the pediatric stroke survivors (last year the shirts said, "I AM a pediatric stroke survivor.")

Thanks in advance to anyone (anyone??? Bueller??) who wants to donate their talents for a great cause!

{if you want pics of last year's shirts for inspiration, just let me know}

Wednesday, August 6, 2008

Floating by

Floating by.... time and my life that is. I feel Sean is growing up so fast. I can not believe he will be 2.5 years old tomorrow. Where has the time gone. He has changed so much over the last 2.5 years it is amazing.

Vacation was awesome we got to stop and relax. We went swimming quite a bit and now Sean is a fishy in the water. He loves it now. He even goes under water with me of course and laughs when we come up. He goes under mushrooms and gets soaking wet too.

All of this coming from a little boy with some sensory processing issues is AWESOME. He is much more comfortable in the water now too. He loves to kick and blow bubbles (try too that is) and jump into the water to me too. I am one proud mommy. It is hard to be back into the swing of things and get back into the groove at work. I am still tired from vacation. Hopefully I will be able to catch up this weekend.

We also got a puppy. Yep we got a puppy we got a chocolate lab who is 2 months old today. His name is Vitus named after St. Vitus. St Vitus was celebrated on my husbands bday, and St. Vitus is considered the patron saint of actors, comedians, dancers, and epileptics. He is also said to protect against lightning strikes, animal attacks, and oversleeping. My husband found his name. He looks bigger than he is in the picture. He is only 5lbs right now.