Simon Peters

Saturday was wonderful!!  We had a very good turnout and everyone said how much fun they had and hoped we'd do it again.  I hope we can!

We auctioned/raffled 32 prizes and held three 50/50 raffles.  The kids did facepaint, tattoos and friendship bracelets.  We think we had 200 people there?

Thanks to all for your support and participation!

Here are links to two articles done on us about PKS and the fundraiser.  They both turned out so well!

http://www.battlecreekenquirer.com/apps/pbcs.dll/article?AID=20107280323

http://www.advisor-chronicle.com/clients/advisor-chronicle/the-face-of-love-pks-benefit-held-today-p94-1.htm

Simon had a sleep study on Sunday night.  He and I are both still sleepy today :)  We're hoping he has outgrown his apnea.  Not sure when we'll find out the results, but I hope soon!

Peace,
Gretchen

Next Saturday at the Dark Horse, I'm holding my first big fundraising event for PKS Kids.  I've been working on it for the past few months and it's going to be a lot of fun.  How can it not be?  Friends, family, beer, food and music!!  Oh and you can win some great auction prizes too!  Jim Oliver, Mike & Kate Reed, and Danae Huggett are our entertainment!

Here are some of the goodies you can win!

• Signed Derek Jeter (NY Yankees) photo

• Signed Joel Zumaya (Detroit Tigers) photo

• Signed Brian Rafalski (Red Wings) photo

• Longaberger basket

• Gift Cert. to Harvey’s Farm

• Gift basket with homemade toffee, wine, etc.

• A similar gift basket

• Wine auction

• Gift Cert. for a Motorcycle helmet from Flywheels

• Knitted shawl

• TWO $25.00 Gift Cert. to Pastrami Joe’s

• Coach Purse

• Wine travel case

• Pizzazz handmade purse

• $15.00 Mancino’s Gift Card

• 2 ND football tix

• Vera Bradley clutch

• Gold Canyon gift basket

• Be A Number t-shirt

• Garden basket

• I’ve Got Your Back basket

• Tera Ward Photography $75.00 gift card

• Barber Parlour gift cert and products

• Pistons autographed ball and tix

• DeWalt electric drill

• Painted window

• Pottery bowl

• $50.00 Apple bees gift card
• 2 rounds of golf at the Medalist

• Golf Balls

• Practice Driver

• $25.00 gift certificate to Amazing Grace

Here is the flyer advertising the event.  Your support means SO much to me.  Thank you!

Oh, I've been ignoring all of you!  (and I've been chastised so I apologize)

We've had a very busy summer so far.  Soon after school got out in June, we made our biennial trip to the PKS Kids Face2Face Conference.  We were in Mt. Laurel, NJ this year.  (up until the trip I was frantically doing things to prepare for it!)  We had an AMAZING TIME!   There were about 27 families there this year, including families from Canada, the Netherlands and Australia!  We met so many new people and children.  As usual the girls had SO MUCH fun with all their PKS friends!

Kevin Hershock from Be A Number came to give our kids a shirt.  He was very inspirational  and wanted to show our little ones that they DO matter and are loved! 

We had Geri Jewell, the actress, come speak about Ability Awareness :)  And of course there were doctors and other specialists there to teach us.

Also Rick Guidotti, another amazing person doing so much good for others came.  He is a photographer and founder of Positive Exposure.  Check out his work!  He came to take pictures of our beautiful children.

We got home from NJ and 3 days later left for the lake up north.  Several relaxing days later and we were home.  2 days later a friend and I met in Chicago for the Abilities Expo.  If you have any need of adaptive equipment, etc, check out an Abilities Expo.  Sooo worth our time!  Kate and I had a great time of course, my first in years and years and years getting away by myself.

Now, I'm frantically preparing for my fundrasier.  PKS Kids Friends & Family Fest on July 31st at the Dark Horse in Marshall  from 3:00-6:00.  You DO NOT want to miss it :)  We have a lot of great prizes for our Chinese auction and we'll be having a 50/50 raffle and food and drink sales too.  What a FUN WAY TO SUPPORT PKS KIDS!!!   Tickets are available at the door for $5.00/adults and $1.00/children.  I hope you'll consider joining us!

Simon is doing marvelous!  He had a few small seizures last month, more than usual, but he was on the go non-stop which usually facilitates some.  Other than that, not much on the Simon side to report.  Just happy and kissable as always!!

Enjoy summer, it's flying by :(  I'm going to add a new album instead of posting all the pictures I want here.  Stay tuned!

Gretchen

We went to school with Simon for a little bit yesterday.  His PT Deb sent a stander home for Simon to use.  She has good experience with aggressive standing fixing loose hips so we're going to try it.  He'll be standing about 30 minutes at school and 30 minutes in the evenings at home.

Yep, it's a converted DOLLY!    It really does the trick though.  It keeps him totally upright and we can loosen the straps to encourage trunk control.  His left leg is a little shorter due to the hip, so we have to shim it.  I forgot to find something more official and the magazine didn't really do the trick.

I think he likes it!!

Best of all, it's compact in our living room.

As I said I've been noticing some curvature of Simon's spine, so I called the orthopedic doctor for an exam.  They did an xray of his hips and a spine exam.  I was so surprised when they said his left hip is ever so slightly out of socket.

Popping hips is very common with PKS, but Simon's have been perfect until now.  His right leg is a little longer than his left, but it's because of the left hip, it's not fully engaged and so it's riding higher.  I'll scan the pics and put them up if you want.  She said that if/when it becomes fully dislocated (my term) that we'd have to decide if we want to just leave it out or have surgery to place it back in. 

And yes, his spine is slightly curved.  He curves high on his back over to the left.  Dr. Vanderhaave said we can brace it or not.  I asked for a brace because I want to stop it sooner rather than later if it's possible.  She did say that the brace should put some pressure on the curve and give it some correction. He'll be wearing a TLSO brace. This is not what I've heard from other parents so I hope she's right.  We go back in about 6 months for another xray and check of the hips.

So now, we're not only dealing with scoliosis, we're also facing the hip business.

Two more checkmarks in the PKS column. 

There hasn't been much to say.  Simon had a heck of an ear infection a few weeks ago that took about 2 weeks to clear up.

His Spio suit is still working very well for him.  Seizures are much improved and on Monday we see an orthopedic doctor for x-rays for scoliosis. I'm praying it isn't too bad.

Our conference is in June.  THANK YOU SO MUCH to all of you who voted on the Pepsi giveaway for us.  We didn't win, but I'm thrilled that we got down to 31.   The support was awesome.  It's going to be a great conference, I think we'll have 25 familes attend.  That's outstanding!!

And that is that.

Happy Mother's Day to all my friends and family!!

Love, G

You all know the state of Michigan is broke.  It's officially trickling down.  We were denied a Convaid Cruiser and a Rifton Chair for Simon after about 6 months of waiting.  Makes me worried about the future when major things are absolutely needed.

Pray for this recession to be over SOON!

Was putting on Simon's Spio vest this morning and had to have him lay on his tummy on the floor with no shirt on.  I could tell his spine is visible crooked.

Cross off another thing I was hoping we could avoid with Simon.

Time to go see the Orthopedist I guess.

Last week Simon got his Spio vest.  I really like it already.  It's a pressure vest and those are really good for exceptional children.  They give a lot of sensory input which is great.  I wanted it for him 1) for support for sitting/standing and 2) for positioning.  He's only just slightly beginning to show some signs of scoliosis, so we want that stopped NOW!

Here is me trying to have Si sit without the vest.

Here is what the vest looks like.  Velcro on...very easily.

You wear it right next to the body.

And here he is sitting with the suit.

See how much straighter his back is?

I think it's a HUGE difference.  We were lucky insurance covered this for us (more to come on that), but if you had to pay out-of-pocket, these are quite inexpensive.  (For special needs items!!)

Plus Darla at Spioworks.org has been so awesome!

Two weeks ago Simon and I had a very busy week.  Well, perhaps I should say a busy day.

Friday March 12th, we were invited to speak at the middle school about PKS and tolerance.  I spoke to two audiences--the 7th and 8th graders and the 5th and 6th graders. It went so well.  They seemed very interested and had lots of questions.  My basic message was "Different is OK".  We really are different from each other anyway, in less subtle ways.  I think it was all really well-received!

Simon was very popular with the girls afterward

Then we went up the the high school to collect the money the students raised for PKS Kids and take a picture.  The kids raised more than $200 for PKS Kids through change donations and buying bracelets.

Then it was off to Gordon school to visit the kindergarten classes.  The week before, Gordon school had worn jean for rare disease awareness.  Kids paid a dollar to wear jeans.  I was still working as lunch lady and they had LOTS of questions for me.  All the students did.  So Mrs. Buzzell let me bring Simon in and the kids could ask me whatever they wanted.  Personally, I think it's a great way to teach tolerance.  They see how much we love Simon and how he's just a part of our family and now they understand WHY.  Why does he wear hearing aids?  Why does he make that noise?  Why is his nose crooked?  They were great.  And at least one raised his hand and said, I think Simon is very cute

The next week, Si was sick all week with a head cold, etc.  Then he gave it to me and I'm still sick.  I'm going to the doc tomorrow.

Simon got his new Spio suit!  I will take a picture of him and post more about it in the next few days.