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

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.

http://www.theratogs.com/AtaxiTog.aspx

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.

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 kidshavestrokes.org 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}

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.

HE FINALLY JUMPED and more GOOD NEWS

So we have great news all around for the most part to report.

The pedi hemo. said that his levels of Protein C are still low but a little bit higher than they were a few months ago. We tested for a lot of other more common blood clotting disorders and some were negative and some were positive but the ones that were positive turned out later to be negative when they did other tests within those tests. (Sorry if I am confusing any one)

The second new is that Sean finally got air he JUMPED. It was only a little bit off the ground but he did it and both feet were off the ground at the same time.

He had is 6 month review with his PT and he is still around 21-22 months level for locomotion skills, and ball skills. He has come a long way and she is very proud of him as well.

He will have his OT reviews and Speech reviews over the next few weeks.

And lastly I have been having emotional thoughts of telling everyone or certain family and friends about Sean. I too as some of you have felt the guilt and curious of our little ones will resent us later for telling people. But I am honestly going to go with my mommy gut and instinct and just tell as many people as I can and get as much awareness out that anyone and everyone can have a stroke.

The more I think about it, the more I think maybe Sean will be proud that I can help make a difference in another ones lives and families and get the word out and TELL everyone so will stop happening or how to get an earlier diagnosis.

Anyone can have a stroke, children, adults and unborn babies can HAVE STROKES.

Sean was on people.com............

Sean was on people magazine.com and I didn't even know it. I wish I found out sooner but I remember submitting his picture a while back and this was posted in November of 2007.

My manager at work was searching for birthday cake pictures and she found him on People Magazine. Wow. I am shocked and excited. This just made my day.

Here is the link if you are interested in seeing his picture!

http://www.people.com/people/package/gallery/0,,20146975_20161849_3,00.html

Happy a safe and Happy 4th of July

Just wanted to wish everyone a happy and safe 4th of July! We are potty training this weekend starting today! Big boy underwear all weekend except naps and bedtime!