~six months~

I mentioned we would do something on Landry's 'would be 6 months old" day on the other blog. I wanted to post on our family blog because it is as a family that we remember our little angel. The plans intended for this day have been put off, probably until his first birthday for several different reasons. We improvised and had a good day anyway.
We went to the cemetery to visit and release balloons and then we went to eat in Garden City. We got back too late for cake and ice cream so we put that off until the next day.
If you look close Owen is actually smiling!!
Six balloons for six months for Landry. We always have to get extras for the other kids.Bentley releasing his balloons. We watched these balloons until they were less then a spec. Actually, everyone else did because I lost track of them pretty quickly!
We can't celebrate anything at our house without a cake. Lenn figures Landry is the only one who gets a cake for 6 months. I am not an artist but that is supposed to be a dragonfly on there.

What a good guy! Go Jimmie Johnson

10/01/2010
"Cookies for Kids' Cancer Wins Additional $20,000
By Earning the Most Votes in Samsung Helmet of Hope for More

Jimmie Johnson Foundation surprises 2nd-place Gwendolyn Strong Foundation with an additional $20,000 grant after reading email exchange between the top-two charities

CHARLOTTE, N.C. (Oct. 1, 2010) – Cookies for Kids’ Cancer became the deserving winner of an additional $20,000 grant after earning the most votes in the Jimmie Johnson Foundation Samsung Helmet of Hope for More campaign.

Four-time reigning Sprint Cup Series champion Jimmie Johnson revealed the winner on Speed Channel’s “Trackside Live” program Friday evening. Johnson also surprised second-place finishing Gwendolyn Strong Foundation by announcing that it would also receive a $20,000 grant, a decision made after Johnson and his wife Chandra received an email exchange between the top two charities.

“We were part of an amazing email exchange between Cookies for Kids’ Cancer and the Gwendolyn Strong Foundation that took place after the voting contest ended. Each charity could see their voting percentage tally online, and it was clear the contest was between these two organizations. On their own, they decided that regardless of which charity won, they would split the $20,000 grant,” explained Johnson. “Here are these two families who are each trying to raise money and awareness to help find cures for diseases that their own children are battling, and both of them are willing to give away half of the grant to help the other work toward their goal.”

“When we saw what a selfless decision that was and the sacrifice that each was willing to make, we really wanted to step up and do what we could to help each of these amazing organizations,” added Johnson.

The thirteen Samsung Helmet of Hope charities each received a $10,000 grant and placement on Johnson’s Sprint Cup Series race helmet for the Oct. 10 event at Auto Club Speedway. Each charity that elected to participate in the Helmet of Hope for More initiative then had the opportunity to Hope For More and win additional funding through the online voting contest.

Over 125,000 votes were cast during the three-week voting period, with Cookies for Kids’ Cancer and the Gwendolyn Strong Foundation earning more than 50% of the total votes. The two exchanged the lead daily throughout the event and were within a few hundred votes in the final days.

“This was the first year we had the Hope for More contest and we couldn’t be more thrilled with the way it turned out,” said Chandra Johnson, co-founder of the Jimmie Johnson Foundation. “We weren’t planning to award grants to two charities, but these two organizations put so much time and effort into the program, especially considering the families of each are battling to save their children’s lives. We are proud and humbled that we are able to help with their missions.”

Cookies for Kids’ Cancer was founded by Gretchen and Larry Witt when their 2-year old Liam was diagnosed with a deadly form of pediatric cancer called Neuroblastoma. Their family learned quickly it is a cancer that only about 30% of children survive, and that pediatric cancer is the leading cause of death by disease for children under the age of 18. Cookies for Kids’ Cancer’s top priority to develop new and better treatments for the children battling cancer around the world.
The Gwendolyn Strong Foundation was born out of Bill and Victoria Strong’s firsthand experience with their precious daughter, Gwendolyn. Gwendolyn was born perfectly healthy in October 2007, but was diagnosed with the terminal disease Spinal Muscular Atrophy (SMA) Type I at 6-months-old. The Strongs are personally and passionately dedicated to leaving no stone unturned in raising awareness about and funding research for SMA and supporting families who are impacted by SMA and other life-altering diseases." The article can be viewed and www.JimmieJohnsonfoundation.com.

Thank you for all of you who helped vote. We love and appreciate each one of you.

If I can do this...anyone can!

These are legwarmers for babies. I made them in 25 minutes. If I can make them so can you.
I made them for a friend who started with a goal of 500 but now she is shooting for 1500 legwarmers to donate to the PICU at Primary Children's Hospital. That is where her little Makenzie spent her last days. Makenzie is her inspiration for this project. She is doing an amazing job in behalf of her little angel.
When I was out looking for socks they did not have any women's so I went to the girls section and thought I would try these. After I bought them I thought of all the newborns who end up in the PICU. My niece for one was only 7 weeks old. I think it is so hard for the parents to see their baby in a diaper only. With these legwarmers it will give those parents something to smile about.
To get the pattern and find out more visit her blog http://www.kendraandryanwebster.blogspot.com/.
If you don't sew at all you can buy them and donate too.

Thanks for your help. Also don't forget to keep voting to help fight SMA http://www.voteforsma.com/. Vote for the Gwendolyn Strong Foundation. Vote everyday until the 29th.

Owen's summer 2010

I promised a long over due update on Owen..here it is. As I was going through the pictures from this summer I realized there were too many to post individually so I hope you can see them all.
This summer Lenn was gone most of the time so when he was home we decided to make the most of it. Owen has been healthy but you never know what tomorrow will bring. We wanted some family memories so we now have a few.
Owen is doing as well as he can. They are still surprised when we go to Primary's to see that he is doing so well. He does not have the reserve that he used to. He panics when the vent is disconnected for more than a few seconds. He cannot move his hands or fingers anymore. He can still barley move his ankle but his facial expressions are more than amazing. He gives us kisses, when he is in the mood. He is still such a blessing in our lives, and I would not trade him for the world.
1. Owen touched the temple. We had been wanting to do this and Owen was having an okay day so off we went. (After that he seemed to be back to normal, he so has our number.) 2. Owen petting a baby goat. 3. Owen saying hello to his Dad after a long time of being gone. 4. He made it to a few of Bentley and Abby's softball games. 5. We got brave and took Owen to a movie. Yes, a movie and he loved it, then we went to eat and hurried home.
1.What big sister can resist in dressing up her little brother. He loved the flower in his hair, or maybe it was the fact that Abby was laughing and giving him all the attention she could. 2&3. We went to the park and Owen loved watching the leaves rustle in the trees. 4. Abby let him help her stir her cup cake mix. He was not real sure about that. 5&6. Bentley and Abby were playing with the camera while I was holding him and the pictures turned out great. 7. Grandpa Johnson loves playing with Owen and Owen loves it too! 8. I can just imagine what he is thinking with Abby and Olivia kissing him at the same time. 9. We even took Owen to the Demolition Derby. He loved the noisy cars!
1. Owen loves Bentley. 2. Owen got used to his new stander and loves being in it now. 4. Owens' eyes. We don't get to enjoy these as much as I would like so I love this picture. His eye lids are getting weaker, especially his left one. In this picture you can't tell. Aren't they beautiful? 5. Owen loves to watch us help him color.

1. Kynlee kissing Owen's hand. Owen's cousin loves him and is beginning to show it. When she comes she wants to get to baby Owen. One night while she was drinking her bottle she had to pat and rub Owen's hand. It was so cute. 2. Owen has learned to show off his front teeth and he thinks it is funny. 3. Kynlee asking Owen if he wants "more" of her drink. 4. Owen looking to see if his lights are on. 5. Owen giving his best smile.

SMA Blog Party

We are invited to join the SMA Blog Party, and you are too! It sounds crazy to have Party and SMA in the same sentence. Who would want to celebrate the number genetic killer in children under the age of two? Well no one is celebrating, just trying win another contest to raise money for the cure and raise awareness.


Our SMA story...
It started January 3, 2008 when Owen was born. He couldn't cry, he couldn't move and no one knew why. We were in shock, we were heartbroken and could not believe what we were now experiencing.
They drew Owen's blood, did CAT scans, EMG test and in the end found nothing with an exact diagnosis. The blood tests came back negative or unconfirmed. We had a indescribable feeling that we should trach Owen, so he is still with us today.

Two years later on March 30, 2010 Landry was born. He was a little stronger but still very weak. We chose differently with Landry. We chose to bring him home to love and cherish, rather than have our family spilt and him being poked and prodded. Some people don't agree with our choice and it may have been different if we had any answers with Owen but we feel good about the decision we made. Landry earned his angel wings on April 21, 2010.


Just recently we spoke with a genetic counselor and the neurologist and to put it plain and simple they just don't know. This is motor neuron disease and it has SMA all over it but it is an unidentifiable gene. Which means they do not know where to even begin looking for the mutation. The neurologist thinks it is x-linked SMA, very rare and very new. The x-linked gene was found the November before Owen was born. His mutation was not found on that gene. He more than likely has a form of SMA that has not been discovered.

When I think of that it makes me want to do all I can when I hear of these contests to raise money for research funding. If they can cure the more common forms of SMA than that brings them that much closer to find a cure for all the rest.

In the end, this disease has given us two beautiful children that have brought us so many blessings and heartaches. It has changed us forever and made us different people hopefully for life. We cherish more moments. We have more empathy for those going through hardships. We love each day just a little more. We try harder not to take everyday for granted. We love more. We believe more. We are closer.

That being said please vote for these precious babies and these families that endure this. What more of reason could you need? Look at these boys.

PLEASE VOTE: It’s really this simple –>
1. You can vote once EVERY DAY from now until September 29th at 5 PM EDT
Go to www.VoteForSMA.com, select the Gwendolyn Strong Foundation, enter the two security words, check the Official Rules box, and then click “Vote Now!”
2. That’s it! It’s really that simple
3. Don’t forget to add your name to the www.DailyVoteReminder.com list so you don’t miss a $20K vote.
4. And…don’t stop there — SHARE!

Thanks in advance for the votes.