Jack & Lola Photos

 Last July, my bestie, Lyndsey, was in town for a visit with her family and she shared her amazing photographing talent with us. Most of the photos are of Ella since it was her two-year shoot and she also took some of Nicholas and our family for Christmas cards. Thank you, Lyndsey!

To view more of Lyndsey's beautiful work, visit her website: http://www.jackandlolaphotography.com/

All You Need Is L-O-V-E

Nicholas has lots of love to give. A couple weeks ago he happily snuggled with Ella's dollies-Sally and Lucy. He sang them songs, whispered to them, and shush'ed Ella when she was being too noisy. Words cannot express how much I love this kid!

Little Artist

 My dear friend, Leslie, gave Ella her kids' easel that they had outgrown. Ella absolutely LOVES it and will spend hours coloring, painting with watercolors, or writing with chalk. I enjoy watching her work and am happy she has a place to create. It means less paint/crayons/chalk on furniture and walls!

Unordinary Thanksgiving

 Yay!! I figured out how to re-size my photos so I can post them to our blog again! I am so very happy!

 Thanksgiving is always one of my favorite holidays: there's lots of food, good company, and it's a no-frills day with football, chit-chat, and board games. This year, however, proved to be a bit different for us. Nicholas started not feeling well on Wednesday afternoon so I gave him a treatment and put him in his bed with a movie and he promptly feel asleep, which is not a common occurrence for our little boy. The next day was Thanksgiving and he still felt crummy so I made my green bean casserole and sweet potatoes and sent them with Jeff & Ella to my parents' house while I stayed home with Nicholas. 

 Ella had a great time getting spoiled with tons of attention from her daddy, aunt, uncle, grandparents, and great-grandmother. 

 Nicholas made this adorable turkey with watercolors and feathers at preschool. 

 This is our happy, smiling boy just three days before Thanksgiving. 

 And this is one sick boy Thanksgiving day. This photo just breaks my heart. 

 Ella likes to be near her brother much of the time, and since he was not in the mood to have his little monkey sister around, I shooed her outdoors with Jeff. She played happily in the lawn since it was a dry day and we don't get too many of those around here. 

 Around 5:30, just when I was starting to get really hungry, my sweet husband brought me a plate full of all of my favorites and I ate while watching a movie. It wasn't the best Thanksgiving ever, but I will say that the food was just as yummy!

 The Saturday after Thanksgiving, my mom and I decided to brave the crazy shoppers and headed to the mall. We took Ella with us because she loves to get out of the house and because we wanted to give Nicholas rest time. After a couple of hours, she became lethargic and felt warm so we decided to head home in case she had caught the nasty virus that Nicholas had. Thankfully, her virus was much more mild, with a runny nose and a slight temperature that only lasted 24 hours.

Very Good Things Are Happening!

Today was one amazing day for me and so many other parents who have a child with SMA. This afternoon, the Recombinant DNA Advisory Committee (RAC) unanimously voted YES to Dr. Kaspar's Gene Therapy program moving forward to the FDA for final approval. This is amazing, awesome, so inspiring, and one giant step closer to the cure we have been praying for. 

I watched part of the podcast on my iPhone this afternoon and saw two amazing mommies giving heartfelt speeches to the committee members about their children. I was in tears when, after a five-minute break, the committee came back and every single committee member voted to go forward with the SMA gene therapy clinical trials!! This means, that hopefully, someday very soon no other parents will ever have to hear the words "terminal" said about their baby. 

And if that isn't exciting enough, our most favorite SMA Foundation-The Gwendolyn Strong Foundation-has been chosen to appear on NBC this Saturday, December 8th on the American Giving Awards. They are one of the foundations appearing to win a whopping one million dollars which will help kids like Nicholas gain access to iPads! iPads allow our kiddos more independence with so many amazing apps to help them cognitively, socially, and verbally. Keep your fingers crossed they win and tune in Saturday evening to see Bill & Victoria Strong (hopefully) win that grand prize!

Yes, We're Still Here

Ugh, sorry this post will not have any photos, but Blogger is being completely unreasonable and telling me (and all my Blogger friends) that my Picasa web album is full so I cannot upload any new photos unless I pay a fee every. single. month. Which I am not willing to do. So...I have a couple alternatives but haven't worked out the kinks yet, thus, a post with no photos. Which is not my favorite kind of post. But whatever. (Photo added AFTER I figured out how to re-size our photos).

Anyway, I wanted to blog about what we've been up to lately, which is staying home and being sick. Yuck! All of us have been sick since Thanksgiving. It's been AWFUL. Awful as in constant coughing, runny noses, fevers, chills, vomiting (just Nicholas), body aches, head aches, watery eyes. Seriously, just typing all that makes me want to climb back in bed! Nicholas got it first and was sick on Thanksgiving, so he and I stayed home while Jeff took Ella to my parents' house for dinner. He was sick for a few days, then seemingly better, then REALLY sick all last week. So Jeff and I have decided to pull him from preschool for a couple months just to be sure he isn't exposed to any more nasty cold/flu germs. Ella got some mild symptoms last week too, but was all better in a couple days. Then last weekend I got it and was absolutely miserable. Honestly, I cannot remember the last time I felt so bad which made my heart ache for Nicholas since he suffered with it the longest. I am feeling much better today, but now Jeff is starting to feel crummy. Boo.

I have a love/hate relationship with December. I love all the holiday preparations: trimming the tree, shopping, baking, decorating, gatherings with friends and family, Christmas carols, Christmas movies, and all the church services during Advent and Christmas; but I really hate how it also seems to bring the super-nasty bugs to the Gustafson household. If you recall, Nicholas spent sixteen days in the PICU last December, and busted out just in time for Christmas. Thankfully, we now have all the medical equipment he needs to stay healthy stashed in his bedroom now, so we hope we won't have to see the inside of the PICU this year. Or next year for that matter.

I hope to have a post full of pictures in the next day or two, so bear with me and thanks for reading! And, if you are the praying type, say a prayer that this is the last of the nasty cold/flu germs we see this winter.

A little of This, A Little of That

Mmmm...November is one of my favorite months because it starts to get really cold and without much to do inside, I start to get creative with my cooking. This first photo is one I took last week of a simple, yummy, healthy breakfast. Two poached eggs, fresh tomatos, Tillamook cheedar cheese, and organic seven grain bread. 

  Last week when I was grocery shopping I spotted some persimmons. I have never eaten them before, but heard they are tasty, so I bought a few and have been perusing the Internet looking for recipes to try them in. If you have one you love, feel free to share it!

 My goofy kids have been dreaming of summer apparently. Ella can't get enough of Nicholas's sunglasses and wants to wear them constantly. She also lets brother wear them too, albeit upside-down and not covering his eyes. At least she shared. 

 Last Friday evening, I met Jeff's sisters at Cinetopia to see the final installment of the Twilight series: Breaking Dawn Part 2. Usually I think these movies are so-so. There's nothing too special about them, but I like the opportunity to hang out with my sister-in-laws. I will say, however, that this movie was by far my favorite and the ending was very well done. I read the books awhile back, way before any of the movies were made and I kept wondering how the last movie would play out since the last book was so anti-climatic: (spoiler alert) there is tons of build-up to some amazing battle which never really happens. But the director did a much better job with the movie than the author of the books did and it leaves the audience feeling fully satisfied instead of yearning for more. 

 After the movie we stopped for a drink and to chat at this little beer pub in our town. I wasn't sure what beer to try, so Jami suggested I get a sampler. Most of the beers were amazing and the pear flavored one was my favorite. 

Uncle Brett was in town from Florida this weekend and the kids were super excited to see him as its been nearly a year since he was last home. He spent hours playing remote-control cars with Nicholas, and Nicholas was one happy kid!

 We had dinner at my folks' place this weekend and Ella really enjoys helping Gramme in the kitchen. She stands on a chair and helps with everything from tearing lettuce for the salad to cleaning up spills. 

 My mom is so patient with her and lets her participate as much as she wants. What a sweet Gramme she is!

 That's it for the Gustafsons for now. We are looking forward to Thanksgiving next Thursday! Gobble, gobble. 

All Aboard the Polar Express!

Last Saturday, Nicholas finally kicked his cold to the curb, so our family was able to go on the Polar Express train that Make-A-Wish Oregon organized. The kids were super excited to see a real train and kept saying, "Choo-Choo!" They also thought it was pretty cool that mommy & daddy let them wear their pajamas in public. 

We entered the train station and were happy to see Santa Claus was there. The kids were really shy, but at least Ella didn't cry and run away. 

Nicholas and Ella got beautiful golden train tickets to hold onto while we waited to board. Nicholas said it made him feel very special. 

While we were waiting in the train station, the wondering hobo came and said hello. He made Nicholas laugh every time we saw him on the train. 

 Pretty soon it was time to board the train. The conductor yelled, "All Aboard!" and we went to find our seats. Make-A-Wish was very generous and gave us a lot of space. We had a total of ten seats for just the four of us. It was great because Nicholas could lay down comfortably and when Ella started getting restless, she could wander between both sets of seats. 

 Amanda, the very sweet Make-A-Wish coordinator, snapped this family photo of us before we departed for the North Pole. 

 The train windows were a bit foggy and dirty so this photo isn't the best, but Hood River truly is such a beautiful, serene place. 

Ella was a dancing queen! She loved all the Christmas carols we heard. 

 Santa entered the train when we reached the North Pole and he handed out silver bells to each of the children. The kids thought that was pretty great. 

 Here is a short video of Nicholas and Ella. They both really loved this experience and we are so grateful to Make-A-Wish for inviting us to this fun family event!!

Little Sickies

 November 1st was All Saints Day. Ella dressed up as a toddler version (not very accurate, but the best we could come up with) of Saint Elizabeth of Hungary. Saint Elizabeth was a queen who worked with the poor. 

 I made Jeff pot roast with potatoes and vegetables last weekend. He was one happy fella!

 Ella has been more crazy than usual lately, probably because we've been mostly cooped up at home. She's not one for sitting still and likes to be on-the-go, so I know its been tough for her. I have been trying to come up with creative new activities for her to try (thank God for Pinterest) but none keep her attention for very long. I have a feeling it's going to be one long winter. 

 Our sweet Nicholas has not been feeling very well the last several days. He's not doing awful, but definitely has some sort of cold virus. Ella has it too and runny noses are in full force around here. You would never know Ella is sick, but poor Nicholas has periods of the day where he needs to be on bi-pap (and sometimes oxygen) for several hours because he has so much excess mucus in his nose. Boo. We hate it. If you all could please pray that he gets to feeling better by Saturday, we would really appreciate it. Saturday is the Polar Express train ride that Make-A-Wish Oregon invited our family to attend. We really, really, really want to go because we know both kids will absolutely LOVE it, but we won't take that risk if Nicholas isn't back to baseline. 

Doesn't his sweet face just capture your heart? We love him immensely. Go away, yucky cold!

Also, today is election day. Did you vote? I did. I have to work tonight so I will probably miss most of the campaign coverage, but I have faith that the right candidates will be elected and the next four years will bring good things to the American citizens.