Cold and flu season, that is. Poor sweet Ella is feeling pretty miserable today. She woke up a few times last night complaining of a sore throat and slept in this morning until 11:20 a.m. She was up for about an hour and in that time drank a glass of milk, laid on the sofa watching a cartoon, refused breakfast, and then went back to her bed at 12:40 p.m. and promptly fell asleep again. She got a minor cold from Nicholas about a week ago so I hope this is the end of it and not the beginning of something more serious. Thank goodness Nicholas' virus is gone and he is feeling much better. I just hope I can keep this illness away from him so he doesn't catch anything worse. Please keep our little munchkin in your prayers. I hate seeing her so lethargic.
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Saturday, September 28, 2013
Thursday, September 26, 2013
Technology for Nicholas
Two weeks ago Nicholas started meeting with Kim, an SLP (Speech and Language Pathologist) at Assistive Technology NW to begin to trial an eye gaze system. This was a much anticipated visit as it took our insurance over four months to finally approve the visits.
I was happily surprised when Nicholas was able to use the Tobii Eye Gaze system on his very first visit!! The Tobii is a very high tech device with allows Nicholas to use only his eyes to manipulate the screen. The Tobii allows Nicholas to communicate through picture/word screens. He can look at a picture and choose what he would like to do or say. This first photo shows a screen where he could tell Kim how he wanted her to manipulate bubbles. She blew BIG bubbles at his request, stomped on them (which Ella enjoyed helping do too), clapped the bubbles with her hands, and blew the bubbles up and down.
Later Nicholas played a game where he choose a color on the screen based on a verbal cue from Kim telling him which one to pick. I am happy to report that Nicholas knows his colors quite well!
Nicholas will continue this eye gaze therapy for the next twelve weeks to help him learn how to use the Tobii. He will learn to use the programs that help him communicate as well as some education games to assist with learning. Eventually, once he learns to use the Tobaii properly, he will be able to access the Internet through it to play online educational games and later when he is older and can read and write he can use the device to correspond via email and can use Microsoft Word to create documents. Isn't that awesome?! A whole new world is opening up for Nicholas, and once again I am absolutely amazed by the capability technology allows our child and many others like him. It will also be a great tool for him to use both at school and at home. Nicholas does have verbal communication, but he can be very difficult to understand as he speaks quickly and does not always enunciate due to his weak muscles. This communicative device will allow Nicholas more freedom in his environment and will help him to effectively communicate his needs and wants. It's a huge step for our sweet boy!
Tuesday, September 24, 2013
All About Ella
Our three-year-old was super excited to get a package in the mail last week for her birthday from the Yeomans family. Inside was this adorable handmade hat. Ella loves it and it's perfect for the much cooler autumn temperatures we've been experiencing.
We call her Red Hooded Ella Roo!
Sunday morning was Ella's first day of Sunday School preschool. She really, really loved it! She technically attended classes last year with Nicholas as I was the catechist and Jeff was Nicholas' helper, but this year she's officially enrolled in the class and was excited to do class work with the other preschoolers. For the first lesson we read the story of Noah's Ark, sang the catchy tune "Arky, Arky" and the children painted rainbows with watercolors to illustrate God's promise that He would never flood the world again. Nicholas was in the kindergarten class this year with Jeff again as his helper. He loved seeing old friends and meeting his new teacher.
On Sunday evening we had birthday celebration #2 with my parents and brother's family. Ella was really spoiled.
She got a cute dress, a doll, and a couple of games from Eric, Tina & Vivien.
I got to hold this sleeping sweetie while Ella opened her gifts. Pure happiness.
Gramme & Papa bought Ella a leotard for dance class, some new rain boots for winter, and three room sets and a family for her new dollhouse.
Daddy helped her get the house all set up with the new furniture.
Aren't her owl boots adorable?! The best part is they match her raincoat from last year, which still fits!
Looks like the only thing she needs to complete her dollhouse is a bathroom set. Maybe it will be a Christmas gift?!
What birthday celebration is complete without a sweet treat? This time it was ice-cream cake for the birthday girl!
May all your wishes come true...
Yummy, messy, perfection
Monday was another day of dance class, which Ella really enjoys.
She struck a ballerina pose in her new leotard and hand-me-down tutu.
Listening intently to Miss Sharon during ballet time. She finally got both her tap & ballet shoes, yay!
Then Monday afternoon was Ella's very first dental exam. Connie, the dental hygienist, was amazing with her. She got a new (pink!) toothbrush and then Connie asked Ella to show her how she brushes her teeth...
Then Connie showed her in the mirror how to properly brush so she can get all the hard-to-reach spots, not just the front teeth.
Then Connie showed her all the instruments she uses to clean teeth.
Then Ella got to wear the cool Mickey Mouse shades and the protective bib.
Then the polishing, flossing, and cleaning began...
and the best part was that Ella had no cavities! She got to pick a prize and she got her photo taken for the "Cavity Free Club."
The part she didn't like so much was when the dentist advised her to stop sucking her thumb. He explained that in order for her teeth to straighten, she will need to stop thumb sucking as soon as possible. So far, so good.
But...
This is the face we get when we remind her that she shouldn't be sucking her thumb anymore.
It kind of makes me giggle. Hopefully she can kick the thumb sucking habit soon as Dr. Stinchfield said the sooner she stops, the faster her baby teeth will move back into normal position. The older she gets, the longer it will take for her teeth to straighten. I am so proud of our girl for trying so hard to stop doing something that brings her such comfort.
Ella also had her three-year check-up recently and here are her stats: she weighs 35.8 lbs which puts her in the 85th percentile and she is 41 inches which puts her in the 99th percentile for height. She's right on track!
Saturday, September 21, 2013
Summer Catch Up
As I was going through previous posts and summer photos, I realized there were a few that I didn't share on our blog. These are all somewhat random but worthy of sharing, nonetheless.
Nicholas and cousin Vivi. He really loves his sweet baby cousin.
One summer afternoon Ella crashed out on the sofa. The best part about it was that both her shirt and her shorts are on backward. At least she is consistent!
Several weeks ago,we received a shipment of beautiful dress-up clothes from a wonderful woman I know and her daughter. Ella was so excited to try on the dresses and costumes! Most were a little big for her, but this tutu dress fit perfectly. Thank you Teresa & Riley!!
My paternal grandmother has been recovering from hip surgery in a local rehab/nursing care facility so we went to visit her one afternoon. The kids faces don't show it, but they enjoyed visiting with her. Truly, it is so difficult to see the ones you love grow old, forgetful, and tired. I adore my grandmother and tried to be upbeat and optimistic while we were there, but as dementia begins to set in, my heart breaks for the young, vibrant grandma I once knew, as she slowly slips away.
A good friend of mine was in town one summer weekend in August, so Nicholas and I met up with Holly and her two boys at Top Burger for some ice-cream.
Ella, Rickey, and Victor all choose cotton candy ice-cream.
Then we walked across the street to Crown Park to let the kids get some of that sugary energy out.
Ella is definitely a daddy's girl. She's happy to follow him around and do whatever he does, sit on his lap and cuddle him, or go on adventures with him during the weekends.
So that's it for us for summer posts. The autumn equinox begins tomorrow. Goodbye to summer, hello fall!
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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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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
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All About Ella
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Ity Bitty Baby Ella

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Ella at 5 Years
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