Saturday, December 15, 2012

This Week's Recap

 Nicholas is back to baseline and feeling just great again. He is happy, smiling, talking, and laughing up a storm! Both kids are itching to get out of the house, though, since they've been cooped up for weeks. So, in order to avoid people (who carry cold/flu germs) but get the kids out, we plan to load them up in our vehicle and drive round looking at Christmas lights tonight. I know they will both love it!

 Now that I have finished decorating, buying, and wrapping for Christmas, I spend most evenings by our fireplace admiring this lovely sight. White twinkle lights really do make everything that much prettier!
This is our silly girl wearing mommy's boots. I like to call her "Ella in Boots" since she reminds me of Puss with the mile-high boots up to her thigh. 

Last night Jeff & I enjoyed a night out for his company Christmas party. We drove into the city and enjoyed great food, nice conversation, and a couple of adult beverages. 

Yesterday afternoon I was shocked and deeply saddened to learn of the horrible school shooting in Newtown, Connecticut. Honestly, I cannot imagine the horror and panic those primary school children, teachers, and staff went through. It's an unthinkable occurrence and my heart breaks for those families who will be burying their children this week. May God's grace and love shine upon them and give them strength and healing as they grieve their devastating losses. We lit candles last night as a small tribute to those children and teachers who now reside in Heaven.


Monday, December 10, 2012

Nation-Wide Awareness for SMA!

The wonderfully inspirational Strong family had the opportunity to bring much-needed awareness to Spinal Muscular Atrophy on a national level last Saturday night. Read all about their experience here: 

Friday, December 7, 2012

Everything In Between

The reason I blog so often is because I love to create Blurb books from our posts. It's a collection of our history that I plan to pass on to our children. The most important part of these books are the photos I take along with the memory of what was going on at that time. So, in an effort to catch up and add some memories of the past couple of weeks, here is one long, very random post that bounces all over the map. 
 This is a beautiful photo I took a few weeks back on our way home from Christmas shopping. I probably shouldn't have been snapping pictures while driving, but it was just too lovely to not take advantage of and there were no cars around me at the time. I just love fall in the Pacific Northwest (especially when its not raining)!
 My sweet mother took Ella over to her house a couple of days last week so I could care for Nicholas without a precocious two-year-old underfoot. She completely enjoyed her time with Gramme and zonked out both evenings when she returned home. 
 Nicholas is still requiring some oxygen and his bi-pap during the day. Now its only 2-4 hours during the day plus all night (nighttime is always normal for him) instead of around the clock oxygen and bi-pap. So he is not back to baseline yet, but he's definitely heading in the right direction which makes me one happy mama! He has the best disposition, offering a smile even when he feels crummy. 
 Ella had a slight fever and runny nose last week. It wasn't anything major and she bounced back in a couple of days, thank goodness. 
 I gave Ella her winter hat last week since the temperature dropped dramatically and she was outside a lot with Daddy and Gramme. I had planned to give it to her for Christmas, but when you need to be warm, you need to be warm, right? Now she loves it and wants to wear it all the time. 
 Just a few days ago I was reflecting on how much our baby girl has grown and changed in these last several weeks. She speaks much clearer now and is quite easy to understand. She also repeats absolutely everything we say, so we have to watch what we say and have taken up spelling words we don't want her to repeat. She has also become so cuddly and compassionate. She loves to crawl up on our laps and snuggle with us and has wanted to fall asleep with one of us in our bed every night. We then move her to her toddler bed in her room where she usually sleeps peacefully for the remainder of the night and only gets up when she hears Jeff getting ready for work in the morning. Then she crawls back into our bed and sleeps with me. I have loved her at every age, but I honestly think two is my favorite so far. 
 Here's Mr. Nicholas feeling just fine and off oxygen and bi-pap, thank you very much. His occupational therapist, Miss Pam, came over last Thursday morning to do some school work with him since he isn't going back to preschool until late January or February. Pam is the sweetest and Nicholas absolutely adores her!
 Ella's new buddy is Nicholas's giant Curious George. It's almost as big as her. A few nights ago she was driving all over the house with George on the front of her plasma car and she could not stop laughing. She got a kick out of racing around with her monkey friend. 
 Last night Ella must have decided George needed some manicuring, so she got out the nail clippers and trimmed his fur and toe nails. She cracks me up!
 Yesterday during bath time, Ella learned how to float in the water and was so proud of herself. 
 Today she spent most of the afternoon "reading" her books. She loves to look at the pictures and tell her own made-up story. 
 Each year I buy only one new addition to our Christmas decorations. Usually it's a new tree ornament, but we have so many now, almost too many to put on our tree since we've been getting four feet ones the last couple of years. This year I picked up this cute red berry tree and sparkly snowflake place mat and I am using them as a centerpiece for our dining table. 
 I bought Nicholas a cozy Sherpa blanket for Christmas, but like Ella's winter hat, I felt he needed it early. Now that he's been venturing out of his bedroom into the living room, I thought a cozy warm blanket would make our boy happy, and I was right. He loves it softness and the coziness of it and likes me to rub it on his hands and feet and cheeks. 
I feel like one lucky lady to be a mother to these adorable, loving children. When I was young and imagined what my life might be like in my 30's I never could have imagined that I would be so abundantly blessed.

Thursday, December 6, 2012

Decking the Gustafson Halls

 I was so excited to start decorating our house yesterday since I finally felt good enough to get my butt out of bed after being sick all weekend. I started with our fireplace mantle and really liked it, but it seemed to be missing something, so we bought lights to wrap around the garland today and now it's perfect!
 The Santa Advent calendar has been great to have because Ella likes to move the little candy cane from pocket to pocket and doesn't get into other decorations. 
 We got our tree this evening. Jeff and Ella went to get it and it's just beautiful!
 I wrapped most of our Christmas gifts a couple nights ago. I still have a few gifts to buy, but I am mostly done, which is a good feeling. Now we can sit back, relax, and enjoy all the festivities of the Christmas season. 

Wednesday, December 5, 2012

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!

Monday, December 3, 2012

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.