Yesterday afternoon we went to Nicholas's friend, Camron's 4th birthday party. It was a hot day-nearly 90 degrees-so Camron's mommy, Jen, set up a pool and slip-n-slide for the kids to cool off. Nicholas enjoyed floating in the pool...
And going down the slip-n-slide with daddy!



What a great way to spend a hot summer afternoon!
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While on vacation earlier this month, my best friend, Lyndsey took some maternity photos of me the morning before we left to fly back home. She shared a few with me in a sneak peek on facebook so I thought I would share with all of our blog readers as well.

The Jungle Cruise ride was the first one we went on at Disneyland

Daddy and Nicholas...Nicholas loved seeing all the animals on the Jungle Cruise

Meeting Winnie-the-Pooh

Watching Mickey, Donald Duck, Goofy, Chip & Dale dance

Disneyland band and characters dancing in front of Sleeping Beauty's castle
Celebrate parade
Crashed out after a long day at Disneyland. He loved Pirates of the Caribbean, Winnie-the-Pooh's ride, Casey Jr.'s train, Finding Nemo's submarine ride, and watching all the other people all over the park.

The next day Lyndsey and Keith took us to Huntington Beach and we loved seeing the volleyball players and the...

amazing surfers...

Morning time in mama's bed...playing and watching cartoons
First time at library story time. Nicholas really enjoyed it. They sang "happy birthday" to him at the beginning of class, then we read stories, did finger plays and songs, and Nicholas especially enjoyed the bubble machine.
After the library Nicholas helped mama run a few errands...and the rain missed us, which made getting in and out much easier!
One of our errands was picking up this "birthday boy" tee shirt because it's always important for every one you see to know you're celebrating your second birthday!
After nap time, Nicholas enjoyed playing with toys and watching a few more cartoons...
while mommy made his yummy birthday cake!
Gramme and Grandpa brought over some pizza for dinner so they could celebrate with us
After dinner Nicholas enjoyed opening his gifts from mommy and daddy. The theme this year was balls. He got a large bouncy ball, several small balls he can hold in his hands, a couple squishy balls, a football, and a ball with big holes in it so it's easy to grab. Every time he opened a new one he would exclaim, "Ball!" with lots of excitement. He's an easy kid to please!
He also got some tee shirts and socks since he has a bazillion pairs of pants but not too many tops!
After dinner we ate cake and try as he might...
he couldn't quite blow his candle out so mommy had to help him.
Yum...cake!
After cake was bath time and a bit of cuddle time with daddy and mommy before bed. I think our little man had a fantastic day!
Monday, June 28, 2010
Tuesday, June 22, 2010
Maternity Shoot in California





While on vacation earlier this month, my best friend, Lyndsey took some maternity photos of me the morning before we left to fly back home. She shared a few with me in a sneak peek on facebook so I thought I would share with all of our blog readers as well.
I really love them! Thanks, Lynds!
If you want to check out more of Lyndsey's work, check out Jack & Lola Photography on facebook :)
Zoom, Zoom
Nicholas is getting better and better at driving the power chair at Shriner's! Hopefully we will be ordering one of his own in the next few months. I just love to watch him experience new things and grow and learn. He's such a sweet little boy and his daddy and I are very proud!
Monday, June 21, 2010
Reading with Daddy
Tonight Jeff was reading The Department of Licensing Commercial Driver Guide while Nicholas and I watched some cartoons before bed. Nicholas leaned so far out of my arms I could tell he wanted to sit with his Dada, so I asked him "Do you want Daddy to read to you?"
He shook his head with an enthusiastic yes, so I placed him next to Jeff and he read all about air brakes (which is the portion of the test he is taking tomorrow for his CDL license). Nicholas was happy and content as can be to hear all about air brakes and didn't even mind that there were no pictures!
We love our silly little guy!
Wednesday, June 16, 2010
Gustafson's Adventures in California
Nicholas sporting all his Disneyland gear...Mickey Mouse ears, 1st visit pin, and silhouette cut-out.
Daddy and Nicholas...Nicholas loved seeing all the animals on the Jungle Cruise
Meeting Winnie-the-Pooh
Watching Mickey, Donald Duck, Goofy, Chip & Dale dance
Disneyland band and characters dancing in front of Sleeping Beauty's castle
The next day Lyndsey and Keith took us to Huntington Beach and we loved seeing the volleyball players and the...
amazing surfers...
Nicholas watched the surfers up close on the pier
The morning was a bit hazy, but it was beautiful by lunchtime
Lyndsey and I posed for a photo on the pier
Nicholas enjoyed his first beach experience...even if it was a little windy!

On Sunday Lyndsey and I went to the Rose Bowl Swap Meet and saw all kinds of wonderful treasures
Lyndsey found a cute tiara for the perfect photo op

We had a great time on our trip and were happy to discover that Nicholas is a wonderful little traveler. He was in a good mood the entire trip and rarely complained. It was so nice to get out of the Pacific Northwest and feel some of the California sunshine on our faces...I even got a bit of a sunburn on my shoulders at the Swap Meet! Also, Lyndsey was kind enough to take my maternity photos on Monday before we had to leave and I am so excited to see them. She's so talented and I just know they are going to turn out great!
On Sunday Lyndsey and I went to the Rose Bowl Swap Meet and saw all kinds of wonderful treasures
We had a great time on our trip and were happy to discover that Nicholas is a wonderful little traveler. He was in a good mood the entire trip and rarely complained. It was so nice to get out of the Pacific Northwest and feel some of the California sunshine on our faces...I even got a bit of a sunburn on my shoulders at the Swap Meet! Also, Lyndsey was kind enough to take my maternity photos on Monday before we had to leave and I am so excited to see them. She's so talented and I just know they are going to turn out great!
Lyndsey & Keith, thank you so much for your hospitality!
Saturday, May 29, 2010
Thursday, May 20, 2010
Nicholas Turns Two!
When Nicholas was diagnosed with SMA in April 2009 Jeff and I worried that he might not ever see his second birthday. Today we feel so blessed to have our sweet little man in our lives and we treasure every day with him. This birthday is just a reminder to us that life is so precious and so fragile and we pray that Nicholas will get to see many, many more birthdays in his life.
Mommy and daddy love you to the moon and back buddy! Happy 2nd birthday!
Saturday, May 15, 2010
New With Nicholas
I am so happy that Nicholas's appetite seems to be returning! After a few weeks of drinking only Pediasure smoothies (blended with vanilla ice-cream) and eating only one meal a day, today our little guy ate a whole bowl of oatmeal for breakfast along with a sippy cup of Pediasure and two fish sticks, shredded cheese, yogurt, and juice for lunch. Hopefully he will eat dinner just as well. Jeff and I were starting to get worried about his eating habits, so after speaking with his nutritionist we decided to order Kids Boost Essentials which is similar to Pediasure but with triple the calories. It is the same stuff he would be fed through a feeding tube, if he had one. We should receive it by next week and we will be adding that to his diet instead of the Pediasure. We pray that he continues to eat full meals and starts to gain some weight.
Yesterday, Nicholas received an early birthday present from his Godmother, Lyndsey. She sent him an electronic Thomas the train set and he loves it!
When I laid him next to it to watch it go around the track he said, "Wow!" and started making train sounds-"Choo-choo," as it went 'round and 'round. Thanks for such a great gift, L! I think you can tell by his expression in the photo how much he loves it.
Another new thing is the wrist supports Nicholas received a couple weeks ago. His wrists are very floppy so the supports help give him stability when he is doing various activities. For example, today when he was reading a book, it was easier for him to turn the pages and move his hands to touch the pictures on each page. They also help him to play with many of his toys since his fingers are free, but his wrists are supported.
Next Thursday our little guy will turn two years-old. I am so thrilled to see him celebrate this birthday. When he was diagnosed at ten months we were not sure that he would live long enough to see his second year of life. We are so blessed that he has made it this far and are so happy to see him thriving with such a devastating disease. Thank you for all your prayers, constant support, and words of encouragement.
We love you so very much, our sweet little boy!
Wednesday, May 12, 2010
A Day for Moms
A gift for my mom...a coffee gift basket full of her favorite things. Plus she and my dad came over to our house for dinner on Sunday night. I cooked pork chops, mashed potatoes & gravy, asparagus, and salad. I realized that it was the first time I had made dinner for my mom on mother's day and she loved it so much!
This is a beautiful hanging basket that my mom bought me for mother's day. It is hanging from the wooden beam that covers our patio and every time I look out the window it makes me smile.
Before dinner Gramme gave Nicholas some love.
This little boy is the reason I get to celebrate this wonderful day for moms. He is the joy of my heart and brightens every day with his adorable smile.

Jeff did some really nice things for me on Mother's day as well. He finished working on our leaky bathroom sink, planted some plants in the yard, washed my car, mowed and edged the lawn, and made me breakfast. He checked several things off of the "honey-do" list which truly made my day!
I feel like such a lucky mom.
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Information about Spinal Muscular Atrophy (SMA)
Click HERE to learn about Spinal Muscular Atrophy.
About Me
- Jessica
- Washington, United States
- We are the Gustafsons: Daddy Jeff, Mommy Jessica, Big Brother Nicholas and Little Sister Elizabeth. We started our blog in 2008 when our son was born as a way to document our life. Jeff and I feel so blessed to be parents to two amazing kids. Our oldest, Nicholas, was diagnosed with a terminal condition called Spinal Muscular Atrophy. We are praying for a cure for Nicholas and all children who suffer from this physically limiting diagnosis. We are also parents to a little girl who who brings us sunshine and laughter everyday. We treasure every moment with our sweet kiddos. Please let us know you visited our blog by leaving us comment. May God bless you today and always.
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Falling In Love
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Brother & Sister Love
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Nicholas's Story
Click HERE to read Nicholas's story from birth to his diagnosis with SMA at 10 months-old.
All About Nicholas
sweet. easy-going. smiley. happy. fighter. playful. courageous. loving. joyful. amazing. gift. wise. strong. handsome. kind. brave. Heaven-sent.
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Nicholas at 1 Year
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Nicholas at 4 Years
Nicholas at 5 Years
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Ity Bitty Baby Ella
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