October

First coat is down, now for a few days of good weather so we can finish it all up

Skylar got a new dry erase board from Grandma Joyce, he loves it, and its perfect!!! This is his car he drew.

Skylars pumpkin

Very happy to have a new drawing board, Thank you Grandma!!!!!

and daddy came in with two new monster trucks!

Batman

Skylar playing with his Batman Monster truck and doing a little song today

Busy weekend

Bailey and valentine on the deck prior to its destruction!

Skylar was so good, he kept him self busy with blues clues while mama painted new deck boards.

My dad, he is ripping off the hand rail and steps out of the house, soon we will have an awesome ramp that Sky will be able to go in and out of the house on!!!!

Keith pulling old nails

Valentine could not figure out how to get up on the supports boards.

Keith and dad placing new decking down

is it straight? yep looks good guys

my dad and Valentine

half way point

Sky in the game room with his sissy, he would look out the window and see his daddy or Grandpa go by and tell them "good job, good job" he is such a great kid!!!!

well we are 80% of the way done, we have some decking to go on, build the ramp and stain it, we are praying for sunshine, as it looks now we will have one day of bad weather, and then a few days of good weather, I cant wait until it is all done, its beautiful right now, but I know it is going to look amazing when 100%

not to much has been going on, Keith is working lots, Chan and Moni are busy with school, and Sky is looking forward to Halloween, we are going to turn his purple chair into a monster truck (should be cute). He is really getting into the seasons and the holidays that each one holds. Ill post pictures as it starts to take shape! Oh and next weekend we will be doing our deck and making thresholds so Sky can get out of the house and through the sun room to the deck, should be fun!

Perfect as perfect gets

This morning I got Sky up at 5:00am, he had a bath and got ready for our day at Childrens in Seattle. He did awesome! and right now is sitting in his red chair watching you tube and monster trucks, rocken out.

It is so much work to pack everything up and make such a trip, but we did it and we did well, nothing was forgot, and our trip went great. Sky saw pulmo, trach clinic and his nutritionist. Everyone said "he looks amazing" "he is doing so great" and "keep up the good work guys". It always amazes me when they find out he has not been back to the hospital since our discharge 4 and half years ago, I like that fact, and hope and pray we can keep it up!

Special Gifts from North Dakota

very very happy

Skylar playing with his new Monster Truck ramp from Aunt Ruthy and Uncle lary

Gravdigger

Monster Mutt is from Sara and Ivan

Skylar was so happy to get gifts this morning from his Aunt Ruthy, Uncle Lary, and cousins Sara and Ivan, Im pretty sure you all made his day (: And with the add of one stick, he can play with it with out me doing it for him while in his red chair!!!! Thank You so much, Miss and love you guys!!!!

Family

Sky and his new blanket, I dont know why it posted this way?

Ivan and Sky playing on the Ipad

Sara blowing bubbles for Sky

Sara, Chan, Ivan, Moni and Sky

We had family come out from North Dakota over the Labor Day weekend, it was so nice to see everyone. Skylar got to meet his cousins Sara and Ivan for the first time, and he LOVED them! Sara made all of the kids blankets, they are so nice and warm!!!! We had a great weekend visiting and catching up! I can wait to see them all again, maybe in April for the boys Birthdays, or maybe for Monis sweet 16 in January, I dont know we will see. Skylar is being home schooled by me, I know that allot of SMA parents have there kids go to school, but it just isnt worth the risk for us. Skylar is happy with having mama teach him, and Im happy do be able to do so. Ive set goals for him to reach, and Im sure he will make every one of them!

Skylars school goals: Learn to read, count to 50, learn the seasons, tell time, write his 1st and last name, and we will start to learn math.

Awesome day seeing Monster trucks

going to the track to see the monster trucks!

All of us with the driver of Captain USA Rodger Stidell (very nice guy)

hanging out with Kevin Lewis, Mike Pappas, Gary Schott, Darren Bast, Kelvin Ramer, Justin Cluster and Roger Stidell, these guys were so great, they signed posters for Sky gave him a monster truck, awesome group of people, we hope to one day see them all again!

Chan, Sky, Moni and The Patriot driver Kevin Lewis (very nice guy)

Sky and Keith with Tropical Thunder

Keith, Sky and I with King Crunch

our host Tony, what a guy! I could not Thank you enough

The family at the end of the dinosaur exhibit, very cool dinos!

the dude of the hour and his cotton candy, you cant go to the fair and not get Sky cotton candy!

We had such an AMAZING day, could not have been better, Tony from the Evergreen State fair treated us like stars. We got to get up close to see all the trucks, hear them fire up, meet the drivers and crews. We gave them SMA bracelets and they all are wearing them at tonight's show, where they will talk about our visit. I only wish we could of stayed for the show, but Sky has to eat and he does that best at home, and I was not happy with my suction machine, so we headed home after a couple of hours. These guys were awesome, it was like we all knew them and had been friends for years, I hope one day to take Sky back to an actual show.

Monster Trucks

Tomorrow is our big surprise for Sky, we will leave here about 3:30, when we get to the fair we will meet with Tony, he is making sure Sky can get in to see the trucks up close. Sky is going to be so excited!!!! and after the monster trucks we will be going to a very cool Dino exhibit. Ill post pictures tomorrow night! Ive got everything packed and charged, so all we have to do is get in the van and go! All Sky knows is its a BIG surprise, and we will be able to get some cotton candy.

mellow week or two

Skylars Monster truck paintings

Sky is doing awesome, he has had LOTS of mommy time this past week, Moni and Chan are both gone. Chan comes home Sunday and Moni comes home on the 27th. Sky has been playing Little Big planet (with the help of mommy) and he has been having a blast. We are looking forward to a few last of summer outings in the next few weeks. First and most important the Monster truck show on the 27th, with a Dinosaur exhibit before the truck show. I havent told him, I want it to be a surprise!!!

We have school shopping to do, and lots of school things to get done, they do pictures before school starts hear. Moni will be starting drivers Ed (praying the first class dosent fill up or she will have to do the second one) either way I can not believe she will be driving soon (wow)

August is SMA Awareness month

Make an on-line slide show at www.OneTrueMedia.com

MJ made this video, she is an amazing person who like Sky has SMA. Love you MJ, Thank you for making such a beautiful video!!!!!

Our Candles

Our candle from Diana Tucker

The photo was taken right before Skylars diagnoses of SMA, and the Blessings is from Auntie Ruthie.

Skylar with his SMA candle

Candle from Chandler (he is at his moms)

Candle from Dean and Moe

Candle from Kristina Axeford

Candle from Rutie, Larry, Sara and Ivan

Candle from Sherie

Candle from Shelley and Dale

Last night we lite our SMA candle or all SMA angels hear on earth and in Heaven, I was told by another SMA parent that in fact the candle lighting in next Saturday, but I know other SMA family's that did the same as us last night. What are you going to do. We will light our candle all week in remembrance of all the SMA children. Thank you everyone who lite a candle in honor of Skylar and his SMA friends!!!!

Light Your Candle

August is SMA awareness month and tonight is the SMA candle lighting, please light a candle for all the children who have lost the fight with SMA, and for all the children who continue to fight SMA. Tonight Skylar will light his candle for ^Logan^ we miss him so much, such an awesome little man, love you Logibear!!!!!

Our day at the fair

Today was a great day, Moni had a few friends sleep over last night in anticipation on our local fair. This morning we packed everything up, waited for Grandpa to get here, and we headed out. Sky had a great time, we played a few games, bought some cotton candy, got Skys face painted and checked out the animals. The big kids stayed until 8:00 riding rides and hanging out with friends from school. It has been a wonderful day, I cant wait for the 26th, we are taking Sky to an even bigger fair to see Monster Trucks (shhh he dosent know)

Join Families of SMA at Safeco Field

Families of SMA
Kansas City Royals vs. Seattle Mariners
Friday, August 6, 2010 – 7:10 p.m.

Join Families of SMA at Safeco Field for some exciting Major League Baseball action on Friday, August 6! .

DEADLINE TO PURCHASE: Thursday, August 5 at NOON.

GAME DATE: Friday, August 6 vs. Kansas City Royals – 7:10 pm

PRICING:
• $18 View Reserved Seating (normally $22)
$7 from each ticket goes to Families of SMA (Spinal Muscular Atrophy) – Northwest Chapter

TO ORDER UP TO 24 TICKETS:

CLICK HERE to purchase tickets or copy and paste this address below into your web browser:
https://oss.ticketmaster.com/html/go.htmI?l=EN&t=mariners&o=1697466&g=930

1. Select “Find Tickets” then enter SMA as your promo code and click “Verify”
(ignore the “e-mail address” option).

2. You will need to use the “Create an Account” option on the right side of the following page. This is a Seattle Mariners Group Account (NOT a Ticketmaster account) and will consist of your e-mail address and a unique password that will enable you to order tickets for future Mariners events.

Note: If you have previously purchased through this system and already have an account created, please proceed with your existing account information.

3. You will be able to locate your seating, purchase your tickets, and print your tickets instantly- all from your home or office computer!

TO ORDER 25 OR MORE TICKETS (or if you require wheelchair seating):

• Please call Kristen Leetz at (206) 346-4504.