Simon Peters' website

 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! 

It's Simon's birthday.  Tomorrow he will be 5.  FIVE!  Five. Sigh....

If you haven't, take a few minutes and go to Simon's Beginnings.  Read about his early days.  Life would never be the same again.  Little did I know it wouldn't be the same and that its all a BLESSING! 

1--I didn't know that I'd be a co-founder of a non-profit organization that is doing amazing things!  And I LOVE IT.  I love everything I do for it!!

2--I never imagined I get to go so many places because of Simon.  New York, South Carolina, Atlanta, Philadelphia, New Jersey-next year.  Where next?

3--I didn't think I'd be teaching doctors and specialists about PKS instead of them teaching me.  I didn't know I'd enjoy the visits and learning about everything associated with PKS and especially Simon.

4--I never NEVER envisaged the people I would meet.  People I truly consider family now.  People I love.  And some of these people I'VE NEVER EVEN MET IN PERSON!  But I call them friends. Good, dear, important friends. Or sisters and brothers.  Really.

5--Finally, I didn't know I could love one person this much. Especially one who can't demonstrate his love back to me.  (And I think he loves me).  A little guy who melts my heart each and every time I see him smile or hear him giggle.  A little man who has my heart.  A son who is closer to God then I'll ever be.  A boy who is PERFECT, just as God intended him to be. 

Some of you have heard this before, but after I was released from the hospital, Jim and I were driving over to Bronson (Si was in the NICU there).  I was quiet, filled with some apprehension.  It was December 6th I think, and we were listening to Amy Grant's Christmas cd.  My mind was racing and wondering and imagining.  And then this song came on (which is beautiful anyway) and tears just started pouring down my face. 

Here are the lyrics:

I have traveled many moonless night

Cold and weary, with a babe inside

And I wonder what I've done

Holy Father, you have come

And chosen me now

To carry your son

I am waiting in a silent prayer

I am frightened by the load I bear

In a world as cold as stone,

Must I walk this path alone?

Be with me now

Be with me now

Chorus:

Breath of heaven

Hold me together

Be forever near me

Breath of heaven

Breath of heaven

Light up my darkness

Pour over me your holiness

For you are holy

Breath of heaven

Do you wonder as you watch my face

If a wiser one one should have had my place

But I offer all I am

For the mercy of your plan

Help me be strong

Help me be

Help me

(Chorus)

Breath of heaven

Breath of heaven

Breath of heaven

The words spoke to me...I felt just like that. (Even though I'm no Mary!)  Read the words again.  Can you see why?  I love that song.  Always have, but now it seems extra special to me.  God is with me all the time.  He has a plan and He guides me.

So, Simon my boy, I love you with all my heart.  Happy Birthday.

(I just went over to Birth to June and looked back at the old pictures. (You have to start at the bottom)   He's changed and grown so much!  I'm getting weepy  )

Love, Gretchen

Hello!  It's a gloomy day here, but all the kids are off to school.  Last week Marshall schools were closed for 3 days due to illness.  We kept Simon home too because there was no bussing.  The girls went back for Thursday and Friday, but Simon had a half-day and no school on Fri, so he got a whole week off.

I went to his conference on Wednesday and am very happy to say he's made progress in all his goals!  They say, he's drinking amazingly well from his straw. He uses a "Honey Bear" which is soft for squeezing the liquid up.  He has a straw that the liquid doesn't come drop back out of, and he also uses a Lip Blok  which helps him a lot.  NOW, when I try at home he fusses at me... he knows Mama will give him a bottle

He's also doing very well in his stander!   And it's a harder stander than he's had in the past.  Better for creating head/trunk strength.  He is attending to objects better, using his listening and looking at things.   He's a stinker at nap time--talks through it and then when it's time to work, falls asleep on his teachers

Halloween was a lot of fun here!  Here is Simon and I added a few other pictures to the album on the right.

Where did our beautiful fall go?  Well, we're obviously getting skipped for good weather and the last of good health before winter sets in.

Simon had an ear infection in both ears of the course of 3 weeks.  The last week he's been well, but now is "talking" with a little hoarseness. It's so cute  

Last Monday night I got knocked down with the flu...H1N1? Maybe.  I slept about 35 hours between Tuesday morning and Wednesday late afternoon.  And plenty naps after that.  Glad I'm done, though the cough continues.  No one else shows any signs yet (keep praying!!)

Simon's school closed Friday for illness and the rests of the kids' is closed Mon-Tues-Wed this week.  I'm keeping Simon home as well as there is no bussing and the have only 2 full days and 2 half-days anyway.  I hate when he has to miss (or school is closed) when he is healthy, as there are so many days coming up that he won't be able to go due to seizures and illness.

Alex has been in Iowa just over a week and really enjoying the work and being away from home.  Halloween is just around the corner!  Can't wait to post pics of the kids.

Hope you're all staying healthy. xoxo

We have been very busy the last week or so.  Last Friday we drove out to Long Island, NY to attend a PKS Kids fundraiser.  We stayed with our friends, the Zanes and helped on Saturday with some set-up (well, Jim mostly helped!).  Sunday was the event and it was outstanding.  There were SIX children with PKS there, there was a great turnout.  The motorcycles were amazing and how awesome are these men and women who ride for charity???

Monday Jim and I took Maddy and Natalie into Manhattan for the day.  Mike and Nicole so generously offered to watch Simon.  (THANKS again!!).  We took the train in and walked around for about 11 hours.  We went to FAO Schwartz and Toys R Us, The American Girl Store, Rockefeller Center, St Patrick Cathedral, down to Ground Zero and Battery Park to see the Statue of Liberty from afar.  Times Square is by far my favorite.  I'd love to back again soon.

On the trip Simon came down with a bad cold.  About 15 minutes after we walked in the door on Monday night (at the Zanes) he had the worst seizure he's had in a long time.  Thank you God, that he didn't have it only on Mike and Nicole's watch.  Even when you have a child who has seizures, it's much different with someone else's little one.

When we got home I took him to the doctor because he spent the morning crying.  He had a red ear so we got him on an antibiotic and he's feeling much better today.  He still is a bit stuffy but happy and sweet again

Thanks for the continued prayers and thoughts. xoxo

Some pics are being added to our photo album here.  Check them out!

Most of you know I'm addicted to Facebook   I just updated Networked Blogs to reflect this blog of Simon's.  If you want to follow us on FB scroll down on the right and click Follow this Blog!  I hope you enjoy the beautiful weekend ahead!!