Wednesday, April 29, 2009

Happy Mama's Day

So this is what Sean and I made for his Mama's (grandmas), I am going to make one with him for myself too. Once it stops raining again. We are going to fill it with flowers to, but closer to Mothers Day.
I am shocked he actually let me put paint on his hands, I brushed the paint on, because I knew he would not put his hand in the paint:)

My little Picasso painting away with all different types of brushes.

As you see below he put his painted hand on our cement driveway and it is still there even though it has rained for 5 days straight!

Monday, April 27, 2009


So Sean got measured and we ordered two items from our clinic from DAFO Cascade.

**** Update**** the SMO is for his left foot (unaffected) and the AFO is for the right foot the affected one)

We ordered the JumpStart Leap Frog which helps
moderate pronation or supination and associated gait instability.
open ankle trimline of this supramalleolar orthosis (SMO) allows free dorsiflexion (DF)-plantarflexion (PF) movement.

We also ordered the JumpStart Kangaroo which helps
moderate pronation, supination, toe walking and knee hyperextension.
proximal posterior upright on this ankle-foot orthosis (AFO) blocks PF.
anterior opening allows free DF. Posterior upright is meant to encourage lower leg to move away from it, into DF.
We also added more to his theratogs before he wore the top piece and the bottom piece we now have to tape a X on his tummy because he is not using his tummy muscles and hips and his rib cages are still way to high. I will try to get a picture of him with his tape later today.

Thursday, April 23, 2009

Home from Lobby Day on the Hill in DC

So DC was an amazing experience and I hope to be able to go back every year. Not only was this my first time to DC but it was my first time as a lobbyist too. So I got to meet a lot of wonderful people and some of them pretty much live in my back yard. I hope to stay in touch with a lot of new faces.

So on Tuesday is when we had to go do our "asks" up on Capital Hill.

We met with Sen. Richard Durbin (staff), Sen. Roland Burris (staff), Rep. Janice Schakowsky (staff), and Rep. Melissa Bean (staff). Even though we didn't get to meet with the Senators or the Representative's themselves it was still a great experience being able to meet with there staff who specialize in the health care field.

I got to share my story and I am going to share will all of you too.
I am here today on behalf of my three year old son Sean who suffered a stroke before he was born.

Because of lack of research and awareness it took us 2 years to get a diagnosis and we still don't know why it happened or if it could happen again,

As shocking as it may sound 1 in every 4000 babies suffer a stroke each year and many don't know why. That is why I am asking you to sign the letter to the president so that more money can be spent on research and prevention and find out why strokes are happening to children. Because everything we know about adult strokes does not hold true for children.

My son will have a life long diagnosis as a stroke survivor which means always having a pre-existing condition, and high out of pocket expenses, therapy maximums so that is why I am asking you to pass meaningful health care reform that is affordable, accessible, and adequate.

It was an emotional but rewarding trip and can not wait to do it again, so I hope the American Heart/Stroke Association invite me to come again because together we can make a difference.

Please contact your local Representatives/Senators and ask them the asks in red above because we all need to ask and make them aware.

The NIH currently only invests 1% of funding into stroke research and who knows what % of that is towards pediatric (not much I can assume) so if we can get the NIH budget double in the next 10 years like Obama is wanting just maybe that 1% will increase and more research and prevention can go towards pediatric stroke.

So will you please all send letters to your representatives and senators. And I will be following up with my and hope to build and deepen relationships with all of them. I also passed out Sean's flyer that the AHA/ASA made to each visit (a few posts down). I also wanted to share a few pictures with all of you, please let me know if anyone has any questions!

Tuesday, April 14, 2009

14 updates for April 14th

So there are a lot of things I need to update everyone on. So lets start.

1. Sean switched from OT Aquatic Therapy to PT Aquatic Therapy

2. His PT is thinking his POLLYWOG'S are not doing the trick anymore and we may need to do a night brace, a DAFO, or a jump start brace. We go next Thursday to the clinic to decide and try things on. So for those of you who have these please help. His right foot, ankle, and hamstring are REALLY REALLY TIGHT and he is FALLING A LOT

3. I am going to DC for Lobby Day on the Hill with American Heart and Stroke Association in 5 days and I can not wait

4. I am going to an all night BINGO game with my mom, cousin, and aunt this weekend.

5. Sean is doing very well with PT. He has gone over a 100 times and has really only wet a few times. He is telling me he has to go and he is going poopy on the potty to!

6. I make top loin pork roast and cheesy potatoes tonight and SEAN actually ate it and it was ACTUALLY good, I never made it before. I seasoned it with Garlic and Parmesan.

7. I reorganized my pantry and some other kitchen cabinets today and now I can actually find things:)

8. Sean is now only drinking out of a big boy cup no more sippy cup, no lid, just a cup

9. Sean decided he no longer needs naps. I love the extra time with him, but he is not ready to give them up. He is so crabby if he doesn't nap.

10. Patrick and I celebrated our anniversary last week but still need to make a date night and go out for dinner.

11. I need a new book to ready any suggestions I just finished the Twilight set

12. I order a new desk and chair today with my transition bridge American express card from Allstate today

13. I hate behavioral interviews

14. What is a behavioral interview question you have been asked. Let me know all the ones you know. Thanks

Monday, April 6, 2009

What internal organ are you?

I am the brain

It says I am the type of person who's always on, always churning.

You are alert and quick to react. You like to stay busy.

You are responsible but also demanding. You take up a lot of energy.

You are someone of a deep mystery. Theres a lot below the surface that's hard to figure out.

What are you take the quiz to find out?

Friday, April 3, 2009

Can Kids Have A Stroke..... Yes

Here is Sean's poster for DC Lobby Day, I am so excited. AHA/ASA put it on this blog

and on there facebook page. I am so excited!

Sensory help PLEASE

So I need help. Sean is refusing to eat dinner EVERY NIGHT.

We have tried everything, giving him stuff he loves, or stuff he has eaten several times.

Eating in the kitchen, or his play kitchen, in his special chair.


I mean this has been going on for quite awhile and we thought he would eventually grow out of it. No such luck.

Every night there is a battle, he refuses, than cries, hits, meltdown starts.

I just don't know what to do. I am sure it is sensory related but I am not sure what to do before dinner so he will eat.

Like in order for him to take a bath we rub the brushes on his whole body for pressure.

For him to play with shaving cream, paint, he has to do the wheel barrel walk with deep pressure on his hands.

For him to get undressed we need to hold him tight with deep pressure.

What do we do to get him to eat.

He doesn't get a snack or milk after nap.

For breakfast he eats

Banana and Pancake minis (4) with a 1/2 cup of milk, or has a 60z yogurt with water, or oatmeal, or etc something small.

At school he gets a Dixie cup of milk or water with a few pieces of a snack

Lunch he gets a peanut butter and jelly sandwich, or mickey nuggets 3, pasta, bologna, grilled cheese and fruit or applesauce with a 1/2 cup of milk or water

After nap nothing, sometimes water

Dinner he won't eat anything. We have sent him to bed with out eating several times, I feel bad but I don't know what else to do. If he doesn't eat he doesn't get milk either.

He eats breakfast at 7 AM
Snack at 9:30 AM
Lunch at 12 PM
Dinner 5:30-6 PM

Please help any ideas............................................................................................................

Thursday, April 2, 2009

Things you may not know about me

So I thought I would share with you 10 things you may not know about me. Normally all I do is blog about Sean and other stuff what about me.

1. I love to sing karaoke but not so good at it

2. I hate to clean my house but always do it

3. I want to go back to school

4. I sleep with ear plugs because my husband snores

5. I am afraid to have another baby

6. I would like to write a book some day

7. I love Target

8. I love taking naps

9. I have an older brother

10. I have only lived in Illinois

What do I not know about you. Please share!