skip to main |
skip to sidebar

Last Saturday evening Jeff and I had our first date night in many, many months. With the impending arrival of this baby girl, we thought it would be nice to go out just the two of us for an evening together. The date started off wonderfully when Jeff bought me flowers from the Washougal Farmer's Market, and the bouquet was so big it filled two vases! Then we dropped Nicholas off at my parents' house and drove to the first restaurant we had ever eaten at together-over five years ago-Red Robin, which was nothing fancy, but yummy all the same. After dinner we saw Inception at the movie theatre and we both agreed it was the best movie we had seen in quite a long time. It was a great night that we both enjoyed!


I cannot say enough good things about Nicholas's wrist splints. They have really helped him in the last couple of months! He wears them most of the day now and loves having them on. They help him drive the powerchair, turn pages in books, play with his cars, wave hello & goodbye, push his toys...I could go on and on, but basically, his wrists had become so floppy that these give him the support he needs to do things he wasn't able to do anymore. He is suppose to get another pair soon that are not as bulky and will allow him more freedom of his fingers so he can grasp items better. It will be so nice to have both kinds for him to use.

Nicholas has now had his new twin bed for about a week and he's loving it! My co-worker, Lisa, was so generous to give us this bed that was collecting dust in their spare room, complete with a foam topper that's been great with absorbing Nicholas's weight and making it comfortable for him to sleep at night since he cannot reposition himself as he sleeps. He's sleeping wonderfully-up to 12 hours at a time-which means that mom and dad sleep wonderfully too! I bought him some transportation bedding to go with his new room theme and he loves it...he makes truck sounds and car beeps every time we walk in. I will post some photos of his finished room very soon, but just wanted to share a couple of our big two-year-old boy in his new bed.


My youngest brother, Eric, is getting a lot better at wakeboarding this summer, partly because of his new board that he's riding. My other brother, Brett, works for Ronix wakeboards and Radar waterskis and Eric and Jeff don't mind trying out new products Brett sends them.
Jeff and I haven't taken too many photos together lately so Eric snapped a quick one of us right before Jeff was about to wakeboard. I am now 32 weeks pregnant and feeling pretty good...a little tired again and am dealing with swollen feet on really hot days, but all in all, feeling great!
Brett now lives in Florida and has been in town for a few days visiting us before he has to head up to Seattle for annual Ronix meetings. He loves being home to see his family and his girlfriend, Lisa. Lisa and Brett have had a long distance relationship for about seven months now, but that will all change when she moves to Florida in October. Aren't they a cute couple?

Nicholas is checking out the huge stuffed bear and moose at Shriners. His OT, April, took us on the elevator to a floor Nicholas had never been on to find these huge, furry creatures. He was amazed by their size at a little afraid at first, but then warmed up to them and made "Grrr" noises.





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...

Monday, August 2, 2010
Date Night
Sunday, August 1, 2010
Little Wonders
It's always so nice to see my child experiencing small successes!
Wednesday, July 28, 2010
Nicholas's Big Boy Bed
Tuesday, July 27, 2010
One of My Favorite Things About Summer...
is going boating on the Columbia River. This is where Jeff and I met and fell in love five years ago. I still love watching him wakeboard...he's pretty darn amazing!
I simply love summertime!
Monday, July 19, 2010
Busy, Busy, Busy
Boy, this summer seems to be zipping by! I realized I haven't posted anything on here in nearly a month so I thought it was time to let you all know what we've been up to...
- I think I am in the nesting stage of my pregnancy because it seems that our house cannot ever be clean enough or organized enough for me! We finished painting the walls in the baby's nursery last week (two different shades of pink) and I love it! Her crib bedding has arrived and she has some clothes hanging in the closet now, so this week we will be getting Nicholas's twin bed and moving the crib, changing table/dresser, and rocking chair into the nursery. I also need to get out all of the baby items...the bouncer, swing, moses basket out of Nicholas's closet and transfer them to the nursery. I will post photos of both the nursery and Nicholas's updated room as soon as they are finished.
- Since we've been cleaning and organizing like crazy, we've also been selling lots of things that were stored in the spare bedroom, which is now the nursery. It feels good to get rid of so many things that were unused or not needed anymore.
- We've decided it's in Nicholas's best interest to have a g-tube inserted into his stomach for feeding purposes. Our little guy is now a reluctant eater and Jeff and I are worried that he may be aspirating as he eats since he becomes very phlemy and starts coughing now after eating food (not when drinking). So we set-up an appointment at OHSU to see a doctor to get more information.
- We've been getting lots of yard work done around our home. We planed some flowers, laid bark dust in the flowerbeds, and pressure washed the patio and driveway. It's so peaceful to sit in the backyard now. We've enjoyed several family dinners on the patio in the evenings, but are always sure to spray on plenty of bug repellent because those mosquitoes are soooooo bad this year!
- We've also been enjoying BBQ's with friends, especially our lovely neighbors who we spent the 4th of July with, and who generously let us come swim in their pool on those warm summer days.
Below are a couple of photos of Nicholas taken in the last few weeks... Nicholas loves Jami & Kris's new husky puppy, Nakita. She's only 9 weeks old and so cute! She licked Nicholas's face and he loved petting her. He kept saying, "Woof!" which is his word for dog.
So I guess that sums it up for now.
Happy summer!
Monday, June 28, 2010
Water Play
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!
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!
Donate to Nicholas' Memorial Fund
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.
Popular Posts
-
I took this photo one year ago, yesterday. The day Nicholas died. I didn't know in the hours to come that our son would pass away...
-
Many people have been asking us questions about how Nicholas is doing and where he is in terms of SMA right now, so I thought I would share...
-
It is with profound sadness and utter disbelief that I write this blog entry... Nicholas, the light of our world and joy of our hearts, wa...
-
We have been going to Shriner's weekly this past month to give Nicholas more practice on the power chair . Since he will be turning two...
-
Any mother will tell you she worries about her children, but the worries of a mother who has a child with a terminal illness are profound . ...
-
On Thursday, January 21st, I took a test that would change our lives forever. I had been feeling more tired than usual, napping in the after...
-
Elizabeth Rose Gustafson was born five days early on Wednesday, September 15, 2010 at 11:58 a.m. She was 7 lbs 6 oz and 21 inches long. As...
-
Nicholas Alan Gustafson May 20, 2008-February 28, 2015 Forever 6 years-old 6 years, 9 months, 1 week, and 4 days was the amount...
-
I cannot ignore it anymore. I have tried everyday for the past year and a half to ignore it-the fact that my child will most likely leave th...
-
GUESS WHAT?! A cure for Nicholas and other babies with SMA is right around the corner... literally, like 2010, around the corner ! Can you ...
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.
Nicholas's Birthday
Nicholas at 1 Year
Nicholas at 2 Years
Nicholas at 3 Years
Nicholas at 4 Years
Nicholas at 5 Years
Nicholas at 6 Years
All About Ella
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
Ella at 2 Years
Ella at 3 Years
Ella at 4 Years
Ella at 5 Years
Followers
Friends
Other Kiddos With SMA
Blogs We Like To Read
Visitors
Translate
Powered by Blogger.

