Tonight Jeff, Nicholas, and I went to Toy Story on Ice. Nicholas was so excited for his first ice show to start! We had great seats in the wheelchair section where Nicholas's medical stroller fit perfectly and Jeff was happy to be able to stretch his long legs.
First on the ice were Minnie, Mickey, Donald and Goofy. Nicholas was surprised and happy to see some of his favorite Mickey Mouse Clubhouse characters.

A few minutes later the Toy Story characters took the ice. Nicholas was thrilled and kept saying, "Wow!" and "Yay!"
Then the little green martians did a silly martian ice dance
Jessie and all the Woody's Round-Up characters did a western skate dance
All the Barbies did an upbeat skating dance to Girls Just Wanna Have Fun, and Barbie Girl. I loved Barbie as a little girl and I loved the songs, so this was my favorite part of the show.
Barbie & Ken
It was a fun show and they did a great job of putting all three Toy Story movies into one show plus lots of new music and dancing numbers. It was Nicholas's first arena event and we all had a great time!
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Ella loves her big brother and he is so enamored with her. This morning he wanted his chair to be placed on the floor so he could be close to her, and she couldn't wait to snuggle up next to him. Later, when I started his morning feed I put his chair up on the base (so Ella wouldn't have access to his g-tube) and he was so disappointed to be away from her that he cried and cried. So I put her in her high chair, which can be adjusted to be the same height as his chair, and they watched Pocoyo together while Ella held his hand. That made him very happy and his tears dried up right away.
I am so happy to report that Nicholas is doing very well. He had a slight cold last week, but seems to be recovering pretty quickly. He is so full of joy and happiness every day and feels fantastic! Life around the Gustafson house has been uneventful the last couple months, but that is just how we like it!
In the next couple months we are planning to get an eye gaze system for Nicholas to trial to see how he likes it. Our fabulous OT found a local therapist who holds monthly clinics where kids can come and try various types of adapted technology. We are excited for Nicholas to try one which will hopefully give him a bit of independence!
This morning my best friend of nineteen years and her husband welcomed their first child into the world. He is absolutely adorable and I am counting down the days until I get to kiss his sweet cheeks! Congratulations, Lyndsey & Keith...you made one beautiful baby boy! The Gustafson family sends our love to the new Yeomans family of three.




Thirteen months means that Ella is walking all over the house and while her walk still looks a bit like the Bride of Frankenstein, she is getting much faster and more sure of herself. It also means that she is super curious about absolutely everything. She is mesmerized by the water in the toilet bowl and tries her best to life the lid up so she can see what is inside. She also loves to look in the garbage can and take things out. She also likes to put her toys in the garbage so we always have to be sure to check it before it goes out to the curb. She is also obsessed with chapstick and shoes and beelines it for either whenever she spots them.
A few posts ago I wrote about my desire to have summer stay a bit longer because of having to be indoors so much in the fall. After pondering this for a week or so, I have come to the conclusion that I really, truly do love fall for many reasons:
Saturday, October 29, 2011
Sunday, October 23, 2011
Limitless Grand Opening
We are so proud of my brother, Eric, and his new business: Limitless Snow-Wake-Surf. He sells snowboards, wakeboards, water & snow skis, boots, bindings, coats, hats, gloves, and much, much more. It's a local shop but he sells online through ebay, so you can like his facebook page to get more information on how to buy his products here.

Our family was there for a couple of hours this afternoon and lots of people came by to check out the store and munch on yummy appetizers.

Ella had fun exploring the store and I had to chase her around to keep her out of mischief.
She looks cute in her Ronix hat, but I think it might be a smidge too big.
She found this small mirror and couldn't stop kissing herself.
Nicholas cozied up in front of the big screen TV and enjoyed watching some snowboard and wakeboard videos. He kept saying, "Wow!" and "Cool!" as he watched the amazing things those professional can do in the snow and water.
Later my mom decided to try a hat on him, but I don't think he was thrilled about the purple hat with sparkle yarn.
He seemed to like the red one with the ball on top much better.
These men's snowboard mitts look more like boxing gloves on his three-year-old hands.
"Um, Mom, I really like this color, but don't you think it's a bit too big?" Yep, buddy, I think you are right. Maybe Daddy will like it better.
We had a great time visiting with family and friends and browsing for new gear. Jeff even bought himself a new knit hat for the upcoming snowboarding season. Eric, good luck with your new business venture. We wish you nothing but success, brother!!

Our family was there for a couple of hours this afternoon and lots of people came by to check out the store and munch on yummy appetizers.Saturday, October 22, 2011
Two Peas in a Pod
Friday, October 21, 2011
Changing Lives. One Heart at a Time.
Dear Mommy,
I have felt your tears, falling on my face. Someone else might think they are tears of sadness, because of what I can't do....
I KNOW DIFFERENT.
I know those tears pour from your heart out of gratitude for me, because of what I CAN do: I can love everyone in the purest form possible. Unconditionally. I can be judged, but will never judge in return. I know different because I feel, in your hugs and kisses, that I'm perfect just the way I am. I have seen you hang your head down in shame, when we go out on adventures. Someone else might think you are ashamed of having a child like me.
I KNOW DIFFERENT.
I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won't look you in the eye, but stare at me, when they think you don't see. I know different because I've seen the many, many more times you have raised your head up high, with pride, because I'm yours. I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid.
I KNOW DIFFERENT.
I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life-you tell me I don't need to be typical to be amazing, I just need to be here. I know you have a big job, taking care of me. I know your body hurts, because I'm getting so big. And I know you worry that you aren't good enough, and that you will fail me.
BUT I KNOW DIFFERENT MOMMY.
I know that even on your worst days, you will always be enough for me, and I will always love you more than you know.
I have felt your tears, falling on my face. Someone else might think they are tears of sadness, because of what I can't do....
I KNOW DIFFERENT.
I know those tears pour from your heart out of gratitude for me, because of what I CAN do: I can love everyone in the purest form possible. Unconditionally. I can be judged, but will never judge in return. I know different because I feel, in your hugs and kisses, that I'm perfect just the way I am. I have seen you hang your head down in shame, when we go out on adventures. Someone else might think you are ashamed of having a child like me.
I KNOW DIFFERENT.
I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won't look you in the eye, but stare at me, when they think you don't see. I know different because I've seen the many, many more times you have raised your head up high, with pride, because I'm yours. I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid.
I KNOW DIFFERENT.
I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life-you tell me I don't need to be typical to be amazing, I just need to be here. I know you have a big job, taking care of me. I know your body hurts, because I'm getting so big. And I know you worry that you aren't good enough, and that you will fail me.
BUT I KNOW DIFFERENT MOMMY.
I know that even on your worst days, you will always be enough for me, and I will always love you more than you know.
Sunday, October 16, 2011
Henry Porter Yeomans
This morning my best friend of nineteen years and her husband welcomed their first child into the world. He is absolutely adorable and I am counting down the days until I get to kiss his sweet cheeks! Congratulations, Lyndsey & Keith...you made one beautiful baby boy! The Gustafson family sends our love to the new Yeomans family of three. Saturday, October 15, 2011
Ella is Thirteen Months
Today our sweet munchkin is thirteen months!
She now has four upper teeth and her lower middle ones look like they might cut through her gums any day. She is wearing 12-18 month clothes, but the 18 month ones are still a bit big as she is long but rather skinny despite the large amount of food she consumes. She reaches her hands to be picked-up all the time and likes when her daddy tosses her in the air. She says a few words now: "What's that?" "Mom" "Dad" and "Hi" are the ones she says most frequently. She likes to climb up on her toy box now to get up on the sofa or computer desk. She can also climb off of the sofa, ottoman, and our bed (which is kind of scary because it is so high off the ground). We have an app on our iPad that she loves called Baby Finger. She touches the screen and shapes, numbers, and colors pop up with sounds. She thinks it is pretty great that she gets to use something that usually only brother or mommy handles. She still sleeps about twelve hours every night with a two-three hour nap every day.
She is such a delight and we truly enjoy being her parents. She makes us laugh all the time and brings so much joy to our life. We are beyond blessed to have our little Ellie Roo!
Friday, October 14, 2011
Sibling Love
Ellie now gives her brother (and mommy & daddy) kisses. It's the cutest thing ever!
The kids have been enjoying baths together every morning now that Ella is big enough to sit in the bathtub without her bath chair. Nicholas loves having her in there to play with him. He never wants to get out anymore!
I absolutely love being mommy to these two precious souls. I can think of nothing better in the whole entire world that watching them interact with each other and love one another. They are becoming the best of friends. Nicholas constantly asks, "Where did Babe go?" as Ella toddles around the house and his eyes light up as she enters back into his line of sight again. He says, "Hi, Babe!" to her and she will often squeal and run over to him. She also likes to lie next to him on the sofa and will cuddle with him for short periods of time and watch a bit of a cartoon with him. Ella brings toys to Nicholas and likes to play with him. He is all smiles whenever she shows him any attention. They both smile all the time and have such sweet dispositions. They are the joys of our life and I thank God every single day for our two cherubs!
Thursday, October 6, 2011
Welcoming Fall
A few posts ago I wrote about my desire to have summer stay a bit longer because of having to be indoors so much in the fall. After pondering this for a week or so, I have come to the conclusion that I really, truly do love fall for many reasons:- Lazy days where the kids and I stay in our pajamas all day long
- Turning on our gas fireplace which fills our house with warmth and light on cold, rainy autumn days
- Lighting scented candles-pumpkin spice is my favorite right now
- Decorating the house for each holiday: Halloween, Thanksgiving, and Christmas
- Cuddling up in a warm blanket with a cup of tea and a good book or magazine
- Cozy sweaters and boots are back in fashion
- Family gatherings that bring everyone together for the holidays
- Teaching classes at work
- Saturday afternoon nap time for the whole family
- The beautiful colors outside: our grass is green again and the leaves on the trees are starting to turn yellow, red, and orange
- Visiting the pumpkin patch
- Watching movies during the kids' nap time on cold days
- Making yummy soups and crock pot meals for dinner
This is just a short list of some of my favorite things about autumn.
Now that the season has arrived, I am so glad it is here!
Saturday, October 1, 2011
Anniversary Night Out
Every year Jeff and I like to get each other the traditional anniversary gift. This year it was flowers so Jeff had this beautiful bouquet delivered to me while he was at work.
Later that evening, my mom came over to watch our kids so we could go out and celebrate. We had a delicious dinner in downtown Portland and they were so sweet to wish us a happy anniversary on our menus!

After dinner we met up with some good friends and had a lot of fun bowling...







It was a great way to celebrate our fourth wedding anniversary!
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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
Our Wedding Day
Brother & Sister Love
Motherhood
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
Nicholas at 2 Years
Nicholas at 3 Years
Nicholas at 4 Years
Nicholas at 5 Years
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loving. cuddly. toddler. curious. explorer. walker. silly. happy. sleeper. blessing. fearless. adventurous. kisser. sassy. dancing queen. spirited.
Ity Bitty Baby Ella
Ella at 1 Year
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