Simon Peters

Tomorrow, as part of my push for awareness of rare diseases and PKS, Natalie's school (Gordon School) is asking the kids to wear jeans and bring in a dollar for PKS Kids.

I came home from work last night to find this on the couch.

(Translation:  Thursday, that's the day I am going to wear those (these?) jeans)

She picked out her brand new jeans and her PKS Kids t-shirt!  She thought of it all by herself!!

Maybe it's just me, but I think that's pretty awesome.

Usually after I change Simon, when I lift him up, I try and see if he'll "stand".  Well watch out world!  Today I stood him up and he locked his legs (he usually do it 5-10 secs) and kept going and going.  When they would start to collapse, he'd lock them again.  He probably did that 10 times!  And he started to BOUNCE ON HIS LEGS!!  He bounced 3 or 4 times and then stopped and did it 2 more times!!  I told him Yay Simon, mommy's so happy and he got a little smile on this face.  Finally he collapsed with a big sigh!  WOWOWOWOWOW!  The girls and I were very excited and I said Em, that was probably 40 seconds wasn't it?  She said no it was a lot longer than that.

Now that's a great way to start my day!!

In early January Julie (Simon's teacher) called to say that Simon had been doing so great that we needed to re-do his IEP.  He had met all his goals in just about 8 months.  His last IEP was in May 2009.

He has three main goals with sub-goals under each one.

The first is eating and drinking.

His oral motor has been very good!  In fact, Sharon (OT) was giving him a sucker and he was doing tongue lifts around the dum-dum while we were meeting and slurp-slurp-slurping on it. No drool or anything!   He is also starting to do more munching.  He is starting to use a chewie bag.

The second is lower body movement and control.

His upper body strength is growing and he is starting to weight bear. Mostly on the legs and his trunk just bends right forward. I want to buy a Wingbo for him, but as usual it's cost prohibitive.  But here's great news!!  They're starting to work with a gait trainer!!!  I honestly didn't know if we'd ever reach that point with him.  It's going to be very slow going (he can't even support his trunk!) but they know what they're doing   Hurrah!

The third goal is understanding cause and effect relationships.

Simon is doing much better with this!  He is also hardly ever chewing on his hands anymore. He's keeping them midline and doing more exploring and touching with them. This is huge—right now he has no idea there is anything outside of his body.  I cannot wait to get his new seat so he'll have a tray for toys, etc.  This is the one we're getting. 

Overall, every teacher/therapist said they were amazed by what he's been doing--largely since he turned 5 in December.  They all adore him and snuggle him during the day when they have the chance.  He's quite popular!!

Today Simon's class and a local preschool class went swimming, so I got to go with them. It's nice when the water is 92 degrees!   Si really does like the water (when it's not chilly) so he had fun floating around in there.  Here are some photos!

Getting ready to go in

I kept asking him to grab onto the pom-pom but of course he wouldn't for me.   They said he will at times though and that's great!

Typical winter boredom!  Simon has had a head cold for about two weeks...it's waning now.  He had three seizures during that time, so that's not good.  He does seem to be doing better now, although he's still more tired during the day.

Emily's birthday is Sunday--17 years old!  Winterfest is Saturday night and she's going with her boyfriend Trevor--a really nice young man.

Lent is just around the corner--Ash Wednesday is Feb 17th.  I found some great links so I want to share them!

http://stanford.wellsphere.com/down-syndrome-article/40-ways-to-improve-your-lent/328432

http://marysaggies.blogspot.com/2010/02/lent-2010.html

http://asksistermarymartha.blogspot.com/2007/02/plans-for-lent.html

I hope and pray to have a very good and fruitful Lent!

Alex leaves around the 23rd for Missouri.  He has been helping Scott and some of the guys get things ready the last week or so.  He's very excited!

So, that's about it!  Boring like I said.

 Once again Melissa is holding her Avon fundraiser to benefit PKS Kids. Please visit her website between now and Feb.1, 2010 and place your order. Enter FSANY to get free shipping anywhere in the country!! 

Melissa offers this amazing donation in memory of her son Clayton, who had PKS, and passed away 5 years ago.

www.youravon.com/mvanlaningham

Thank you Melissa for your generosity. Please pass this on to friends and family as well!

We went to Saginaw this weekend to celebrate Becky and Connor's birthday (Simon's aunt and cousin).  We had a great time...I got these 2 cute shots of Simon asleep in a chair at Becky's.

Hello, I don't know if you saw the new logo on the home page here, but it's for The Global Genes Project.  This is a campaign presented by the Children's Rare Disease Network.   It is very very hard to fundraise for an organization that have small numbers of people affected (such as PKS Kids and dozens of others) so the CRDN was created to band together all these organizations under one fundraising umbrella/campaign.  It is a world-wide organization and The Global Genes Project is a massive effort to raise awareness and funds for rare disease organizations.

CRDN has designated February 28th of every year as World Rare Disease Day and this year has created the GGP (Global Genes Project) which will run the month of February.

I have a few favors to ask on behalf of PKS Kids:

First, are there any good sew-ers out there who could make some of these for me if I bought the materials?   http://www.crdnetwork.org/blog/how-to-a-jean-ribbon-for-global-rare-disease-day/comment-page-1/#comment-59

Second, would you please consider participating for PKS Kids in the GGP by organizing an event at your school or work?  (More resources will be added online shortly)

I plan on contacting some local businesses to see if they'll participate in the $1 Makes A Difference campaign.  If you are a business owner and will participate, please let me know and I'll get the materials to you!!

Third, would you please wear jeans on February 28th to show your support for PKS Kids??

Lastly, I ask please, for you to pass this on to ALL YOUR FRIENDS AND FAMILY!  This is a world wide event and we'd appreciate your support!

Any questions, or want to participate please contact me!

Thank you so much,

Gretchen

Although I'm trying to be more positive in my life, I can't say I'm looking forward to the next few months.  The gray and gloom are just not as nice as sunshine!

I'm very very happy to say that Simon is bottle free!!   The day of the video is the last day he had any bottle.  Hoorah!!   He drinks so well from the straw, and does more drinking and does it faster than the bottle.  It still feels great 3 weeks later!! 

Christmas was beautiful, because of course, it was Christmas!  Simon got a bumpy switch and a little light up water toy to use with it and some other things.  I'm hoping he gets his new seat soon.  It has a tray and will make toy play so much easier to encourage.

The kids are all back in school now...I love a quiet house!

If you have 30 seconds after you read this, please say a pray for my friend Kate's husband.  He has been fighting cancer for about 18 months and wouldn't a cure be great?  They also have a son with PKS.  Thank you.

Have a great day!   The best is yet to come.

Gretchen

Sorry, he wins.

I've posted this all over FB and Ning already, but want to share it here as well!  I'm so proud of my little guy.  He turned 5 and decided to drink from a straw!