Unite for the Cure Update

Today, November 30th, is the soft deadline for Unite for the Cure. There are a few families who have fundraisers planned in December and January, and of course, we are still taking donations through the holiday season. But I wanted to update my loyal blog readers with this fantastic information:

To date our family has raised $6,715.00

Our (27 family) combined total is:
$95, 619.49

Isn't that amazing?! In just three short months we have raised nearly $100,000!! I am so excited and so hopeful that this money will help fund a potential cure for Nicholas and all the other people affected with Spinal Muscular Atrophy. I am sure that in the next few weeks we will hit our $100,000 goal and I will let you know when we do! Thanks for supporting our family in all of our fundraising efforts over the last few months. We could not have done this without the help of our family, friends, co-workers, and kind-hearted individuals who heard Nicholas's story and simply wanted to help.

God bless you all!

Family Thanksgiving

This year we had a nice, quiet dinner at my mom & dad's house. Doesn't the table look lovely?
Jeff and Nicholas being silly

Nicholas getting ready to eat his first Thanksgiving meal. Last year he could only eat baby food, so this year he enjoyed mashed potatoes with gravy, stuffing, cranberries, green bean casserole, and sweet potatoes.

My brother, Eric, and his wonderful girlfriend, Tina. Our family adores her!

Especially Nicholas...both Eric and Tina are so good to him.

Silly photo in the kitchen with mom

Relaxing after dinner with Jeff

My wonderful dad and me

Playing Mexican Train after dinner...it looks like I am thankful for my wine!
Eric and Tina being silly during our game

We hope you all had a wonderful Thanksgiving!

A Day To Give Thanks

A few days ago a friend shared this quote:

"The Pilgrims made seven times more graves than huts. No Americans have been more impoverished than these who, nevertheless, set aside a day of thanksgiving. " ~H.U. Westermayer

It made me realize that even though this has been a challenging year in the Gustafson household, I also am thankful for so many things, including:

• The blessing of our wonderful son who is the light of our universe and a daily reminder of the love he was created from.
• The continued good health of Nicholas.
• My wonderful husband who works so hard for our family and loves us both so much.
• My loving parents who would do anything for us kids.
• A comfy home to live in surrounded by a quiet neighborhood with friendly neighbors.
• That Jeff and I both have jobs we love.
• Nicholas's wonderful doctors and therapists.
• Living in the Pacific Northwest.
• Yummy food to eat.
• Two amazing sister-in-laws, who feel more like sisters than in-laws.
• Friends who live both near and far who have rallied around us this year.
• All the loved ones who donated to Unite for the Cure.
• Jenifer: an amazing photographer who blesses us again and again with treasured family photos.
• The ability to always pay our bills on time, even if money is sometimes tight.
• Our educations-especially completing my master's degree this semester.
• Two fantastic brothers who are always there with a helping hand.
• The truly inspiring families who also deal with little ones having SMA. Reading your blogs, chats on the phone, and in-person visits have been what has gotten me through the last seven months. You are all so amazing. Thank you for sharing your strength, wisdom, and guidance.

For all of these and many more, I am very thankful this Thanksgiving.

From our home to yours...May you realize all the blessings you have been given this day.

Alumnae Basketball Game

Tonight Jeff played in annual Washougal High School basketball game. It was the odd graduation years against the even grad years, with Jeff playing on the even team-he graduated in 2000...he's a young'n.

Anyway, he played last year, too, but Nicholas was too little to really pay attention to what was going on. This year was completely different. He was so happy to watch his Dada and the other guys bounce the ball up and down the court and shoot it into the basket. He clapped for daddy and kept calling, "Dada! Dada!" It was so fun to watch him enjoy the game.

And...Jeff's team won! By 40 points! Go Even Team!

Poker Fundraiser Total

Tonight was our final fundraiser for Unite for the Cure and it was a complete success!

We raised $600 total and couldn't be happier!

It was a fun night for everyone. Thank you to all of the people who came out to support this worthy cause and a special thanks to my parents who let us host the event at their home.

18 Months & Raffle Winners

Nicholas is 18 months old today! A whole 1.5 years...my goodness time has just zoomed by! Today he spent the afternoon "coloring" using a water pen and special papers...which mommy loves because there is no mess!
Then he enjoying knocking down his blocks after mommy would stack them up on his tray.


Later in the afternoon we both went to Beauty Temptations for the raffle drawing to benefit Unite for the Cure! The raffle raised $933 through generous donations of family, friends, and community members. I was told that one gentleman drove 45 minutes to buy raffle tickets!

Katie let Nicholas pick a couple of winners...

Then her son, Grant, picked one...

and her daughter, Gwendolyn, picked a couple, too...


All the excitement tuckered Nicholas out so he cuddled with Grant on the couch while Katie called the winners. Here is a list of all of the winners:

Mountain Man Basket: Lori

Pied Piper Pizza & Movie Basket: Levin

iPod: Ashlee

Regal Cinemas Basket: Mary W.

Tutoring Basket: Shawna

Blazer Tickets: Karra

Scentsy Basket: Joan H.

Twilight Book Basket: Kristin

Cooking Basket: Liz

Clothing Basket: Jamie K.

Metal Malisha Basket: Don A.

Scrapbooks:

1. Kim
2. Dorothy
3. Terrin
4. Sarah
5. Shelle
6. Sarah H.
7. Pam M.
   
   Thank you to everyone who participated in this fundraiser and a special thanks to Katie Lewis...you are an amazing friend! We love you so much and appreciate everything you've done for us!

Good Stuff

Nicholas's favorite thing to do is stick his fingers in the holes where the stander tray goes before mommy can put the tray on.
This morning we drove all the way to Shriner's for Nicholas's physical therapy appointment only to discover that I had mixed up the days and there was no appointment for Nicholas this morning. It wasn't a wasted trip, however, because we found out that Nicholas's stander will finally be here at our next visit on December 2nd! Also, the wonderful receptionist, Sarah, gave Nicholas this little stuffed lion toy which he wanted to name Lila the Lion. I rattled off a list of names for the lion...Leo, Larry, Lilly, Lucy...and Nicholas nodded his head enthusiastically when I said Lila, so Lila it is. Nicholas has been communicating more with us lately by nodding and shaking his head and saying, "yeah." I am really loving this age!

Nicholas seems to be feeling much, much better after his cold he had a couple weeks ago. We always know when he's not feeling like himself because he doesn't want to do things he normal enjoys doing: feeding himself, going in his stander, rolling on the floor. He had decreased movement during his cold which always worries us because we don't know if his strength will return. As you can see from the photos, though, he's back to feeding himself again and loving every minute of it! His appetite has returned and he enjoyed eating fish sticks, cottage cheese, and crackers for dinner tonight. He can't get enough cottage cheese lately. He has eaten almost an entire large carton in a week! Impressive, hunh?

On a completely different note...tomorrow is the premiere of New Moon and I'm so excited!! Jeff, my two sister-in-laws, and myself are driving to a theatre in Beaverton to watch it. Apparently Nordstrom bought out the theatre and gave away tickets to people who shopped at their store. My mom got four tickets for me after she shopped there and I am so grateful! Plus, she is going to watch Nicholas for us. I hope it is as good as the previews are eluding it to be.

Thanks, Mom!

God Bless You All!

With only a few weeks remaining before the deadline (Nov. 30), we have raised over $6,000 for Unite for the Cure! We are overwhelmed by the outpouring of support from our community, family, and friends. I just saw that Jeff's co-workers all chipped in and raised over $700 for Unite for the Cure...we thank all of the people who work with Jeff at the Columbia Shop!

I also wanted to thank a few more people who have made donations in the last few weeks:

Russell Beem Jr, Robert & Jayme Cox, Michelle Nelson-Peninger, Judy Schmid, Jessica Green, Scott and Tamar Parker, Jolette & Jim Schmid, Bill Luisi, Toni Hardin, and Emma Schmid

We have two fundraisers that are still going. The first is the raffle at Beauty Temptations. It will continue through this week. The drawing for all the winners of the wonderful baskets will be Friday, November 20th at 4:30pm. I will also post a list of the winners here that evening. The second is a poker night (organized by my fabulous hubby) which will be this Saturday, November 21st. It starts at 5:00pm with burgers and poker will start at 6:00pm. Check the post below for more details.

We could not have done this without your generous support! It means so much to us! God bless you, every one!

Poker Fundraiser for Unite for the Cure

Jeff is organizing our final fundraiser for Unite for the Cure. Here are the details:

When: Saturday, November 21st. Burgers @ 5:00pm. Poker starts at 6:00pm. BYOB.

Where: Nicholas's Grandparent's House
1607 32nd Street
Washougal, WA 98671

Cost: $20 per player. Half of the money will go directly to Unite for the Cure, and half to the winner.

Game: Texas Hold 'Em No Limit Tournament. You can buy back into the game if you go out early, and winner takes all.

RSVP: If you're interested in playing, please either call and let Jeff know, comment to this blog post, or send me a message on facebook.

We hope to see you all there!

PT & Presentation

Here are a couple photos of Nicholas still in his pj's this morning with Katie, one of his physical therapists. She brought over the long wooden table for him to practice sitting at, but he was more interested in pushing his cars off the edge! She also brought the cute green pony you see Nicholas sitting on in the bottom photo. I am pretty sure he liked the pony more when he was just looking at it, because he wasn't as thrilled with sitting or bouncing on it. I think that maybe it was a rough morning because he's finally cutting a molar. I felt his upper gums today and could barely feel the bottom of one little molar.

In other news...this afternoon I did my final presentation for my thesis to my committee members at WSU Vancouver and I passed! Not only did I pass, but my advisor asked me to publish my research report on the Washington State University online journal, and I agreed! Now other WSU students will be able to access my report and use the information I gathered in their studies if they want...and they will cite me as a source. I am going to be published! It's so amazing! She also asked me to do an encore presentation on December 1st for one of her classes to help alleviate some anxiety that they are feeling about the research process. I am so honored to be asked to help these students. I simply couldn't be happier!

It Never Gets Easier

Tonight after I posted my last blog entry I went on to read new blog posts of my SMA friends and I was shocked and saddened to find out that little Owen lost his battle with Spinal Muscular Atrophy this evening. His blog was the first one I started reading after Nicholas's diagnosis and I felt an instant connection to him and his family because he reminded me so much of Nicholas. His sweet little smiles warmed my heart and helped me to feel less alone as I tried to understand Nicholas's new diagnosis.

It is so frustrating to me that there is a potential cure that could save these kids' lives and while we're waiting for it to become available, children are dying.

It's heartbreaking.

It's senseless.

Please help us close the funding gap and make the cure available to our kids: go to www.uniteforthecure.com/donate to make a donation. We need to end this disease NOW before any more children lose their lives. I cannot even imagine the sorrow and loss Owen's parents are feeling this evening. My heart goes out to them.

Our love and prayers are with you Simmons family.

Go Cougs!

Yesterday Nicholas and I ventured to Shriner's Children's Hospital and picked up Nicholas's new orthopedics. His KAFO's have the Washington State University Cougars symbol on them since I will be graduating with my masters degree in education from that university this December! I thought it was an appropriate choice for obvious reasons. He also got a new body jacket which fits much better than his old one..he's just growing so much that it was time for new gear!

Hats

Nicholas's PT gave us a big bag of clothes this week that her two boys had outgrown and it was full of the cutest stuff! In there we found these three hats that I just love and they fit our baby boy perfectly! Nicholas is quite the model, wouldn't you agree? Baby Gap here we come!

Don't these photos put a smile on your face?!

All Hallows Eve

Nicholas sported his Halloween turtleneck all day
Then later dressed in his puppy costume and loved seeing cousins Zoie & Alex
Jeff as Clint Eastwood & me as a vampire

Nate and Erin: Granny & Grandpa
Jenny, Jessica, Eva, Jami & me
James, Will, me, Kris & Jami

Jami & me

What a great Halloween! Jeff, Nicholas, and I spent a relaxing day at home and then handed out candy to the trick-or-treaters. We didn't have very many this year. Just about 15 groups so we have lots of candy left over! Then my wonderful cousin, Koby, came over and stayed at our house to watch Nicholas so we could attend the Halloween Bash to benefit Unite for the Cure. Kris and Jami decorated their house to the nines and had fun games set-up: Rock Band, poker, beer bong, and tippy cup. They made some yummy drinks and had a ton of delicious food to eat. Jeff & I really enjoyed dressing up, especially since we hadn't in a couple of years.

We had a great time at the party and with everyone's generous donations we raised $325 for Unite for the Cure! WooHoo!

Thank you Kris & Jami for throwing such a fun party and helping us exceed our goal!