These photos are a quick glimpse into our lives in the last couple of weeks. My wonderful husband bought me an iPhone for Valentine's Day so I have been taking lots of photos on my phone instead of with my camera (which is on the fritz anyway). I found an app called Instagram that I love because it lets you edit each photo with cool lens options. I have captured lots of photos of the kids, some healthy things I have been eating (in my effort to lose ten pounds by July), the tree in our front yard which is just sprouting blossoms (yay for spring) and items around our home. Last Sunday after mass I took a photo of the newest shrine statue of Mother Teresa and Pope John Paul II. I think it's a very realistic and beautiful interpretation of two amazing people. Enjoy!
skip to main |
skip to sidebar


Nicholas does not get to use his sense of taste very often as he cannot eat by mouth anymore. He is fed by a feeding tube that goes directly to his stomach. Nineteen months ago when he did a swallow study before his g-tube surgery, the x-ray images showed that his throat closes and food pools in his esophagus making eating by mouth nearly impossible for him. However, we like to allow him to have tastes of things as often as he likes. For Valentine's Day, his good friends, Grace & Harry, gave the kids lollipops and Nicholas was in Heaven, enjoying the sticky sweetness of his pop. You can see from the photos above that it made him grin from ear to ear. I have since invested in some dum-dum suckers so he can have licks whenever he likes and the small size of the dum-dum fits perfectly in his mouth. Although sucking on a lollipop is a small thing for any other three-year-old, for Nicholas it is one of life's simple pleasures that make for one happy little boy.










Our little pumpkin pants is seventeen-months-old today! She is busy, busy, busy. So much so that I am going to sign her up for soccer on Saturday mornings so she can play with other kids and get her energy out. I was so excited to learn that soccer starts for little ones at eighteen-months, so next month she will start soccer!! They do other activities there are well: parachute, running, and tumbling, in addition to playing with tiny soccer balls so I think Ella will have a lot of fun.
She is in between clothing sizes right now. Eighteen month size clothes still fit but are starting to get too small and twenty-four month size clothes are still a bit too big for her. She takes after her mama in the eating department. She loves any kind of food and tried sushi for the first time last night. She really liked it and we were careful to only give her cooked seafood in the sushi.
Everyday she puts on my shoes that sit by the front door and points to her coat and wants to go somewhere. We try to go for walks on nice days, but unfortunately we don't get too many of those in the Pacific Northwest. She is perfectly content to ride in the car and loves to go to anywhere. Jeff and I try to take her with us as much as possible.
She loves her brother and has taken to kissing his cheeks all the time. She also likes to manipulate with his arms and help him play toys with her. It's kind of adorable. Nicholas loves all the attention she gives him.
Our sweet munchkin is definitely a toddler now and a baby no longer. I miss those precious baby days, but I really love watching her grow and learn in her environment. She is a blessing straight from Heaven!



Yesterday Ella got into the pantry and dumped an entire box of Cheerios on the kitchen floor. I couldn't help but laugh and told her with a smile on my face that she needed to eat all of the Cheerios off the floor. She made a good effort munching and crunching the little O's and when her tummy was full, she grabbed the empty box and started stuffing the remaining Cheerios back inside. I tried to help her by vacuuming up the Cheerios, but this must of made her mad because she started crying immediately. Apparently dozens and dozens of Cheerios in ones tummy was not quite enough.


Ella has also proven to be quite the escape artist. Anytime the front door is unlocked, she very carefully and quietly opens the door and makes a break for the outdoors. A few evenings ago as I was driving to work, Jeff called me and asked that I lock the door behind me when I leave for work. He explained that he went to the bathroom and then was helping Nicholas when he realized that he didn't know where Ella was. He walked through the house calling her name and finally saw that the front door was wide open and Ella was staring at him through the glass (screen) door. He picked her up and her socks were soaking wet which made him think she had walked around in the grass in the front yard. She had only been outside for a minute or two but Jeff was freaked out, and rightly so. Thankfully we don't live on a busy street, I would guess a total of ten cars drive down our street on any given day, but from now on we will be keeping the front door locked at all times.

Ella also has ninja skills in escaping from her high chair even when she is strapped in. This morning I went to give Nicholas his morning treatment and left Ella strapped in her high chair after she had finished breakfast. By the time I came back she had wiggled her way out of the securely tightened straps and was standing on the seat getting ready to climb onto the tray. Several weeks ago when she did this, I tightened the straps as tight as they could comfortably fit and lowered her high chair so it is not too far off the ground. I assumed this would keep her safe and secure, but now I know never to question our mini Houdini.
Oh, the joys of parenting a fun-loving toddler. To keep myself sane, I have started reading Love and Logic Magic for Early Childhood, it has been helpful in giving tips on how to be patient and how to give choices to get children to make healthy ones that distract from misbehavior. It is very helpful book, but Ella is definitely one to keep both eyes on!
Disclaimer: The last three pictures were re-enactment photos, which probably completely reinforced her misbehavior, but were a must for her scrapbook. Bad, bad mommy.
Monday, March 12, 2012
Friday, March 2, 2012
Pre-School on Skype
After a three-month hiatus, Nicholas joined his pre-school class again via Skype. Nicholas loved singing songs, listening to his teacher read Chicka, Chicka, Boom, Boom, and talking with his adorable classmates. He was excited to show the kids his balloon after Ms. Wendy did a balloon counting rhyme. I love that we have access to technology that can enhance Nicholas's learning experience without having to send Nicholas to school so that he can stay away from those icky cold and flu germs. However, we are hopeful that he will get to make some trips to school this spring and say hi to his friends in person.
Thursday, March 1, 2012
Snow Day
Last night while we were sleeping, we got a couple inches of snow! By the time we made it outside this morning, most of it had melted, but Ella had fun playing in it and Nicholas was perfectly content laying on the patio furniture watching her. It's not often that we get snow, so it was a pleasant surprise on this first day of March!
Tuesday, February 28, 2012
PINTERESTing Foods
In keeping with my new years resolution to use Pinterest to inspire me to be more creative, the month of February was all about food. I made several new recipes that I found on Pinterest and some are keepers while others were just so-so. Below is the image from Pinterest with a link to the website for the directions to make each dish. Enjoy!
http://www.sixsistersstuff.com/2011/12/outback-steakhouse-alice-springs.html
This is super yummy, but I don't know how one can go wrong with a recipe that calls for bacon and cheese.
Really yummy and easy, I just cut a heart out of a slice of bread with a cookie cutter, put it in a frying pan and cooked an egg in the middle. Ella loved it! http://www.shutterbean.com/kalechips/ If you didn't know what to do with kale, now you do! This is super duper easy and a healthy alternative to regular chips. I make them all the time now. http://allrecipes.com/recipe/slow-cooker-pork-chops-ii/detail.aspx These are Jeff's absolute favorite pork chops. He asks for them at least once a week. They are so tender and fall apart when you take them out of the crockpot. http://forkinit.blogspot.com/2010/09/crockpot-barbecue-chicken.html I made lots of crockpot reciepes this month because they are so easy and I can make them to have ready on evenings when I work so my husband doesn't starve. This one turned out pretty good but cooked a lot faster than the directions called for. It was a little dry so I will take it out earlier next time. http://www.sixsistersstuff.com/2011/09/slow-cooker-orange-chicken.html This reciepe was not one of our favorites. It was okay, but I had to modify the recipe a lot. I used less orange juice concerntare and more brown sugar to make it taste better. I don't think I will cook it again, as the local Chinese restuarant has much better orange chicken. http://blogs.babble.com/family-kitchen/2011/02/23/the-best-macaroni-and-cheese-ive-ever-made/ I searched for a new mac and cheese reipe and I wasn't disappointed with this one. It had a good cheesy flavor and the garlic gave it a zesty bite. Yummy! http://www.kalynskitchen.com/2009/01/recipe-for-roasted-green-beans-with.html Easy, delicious veggies as a side for the BBQ chicken dinner. http://www.inspiredbycharm.com/2012/02/very-pinteresting-pasta-pasta-pasta.htmlA four ingredient pasta dish that was a hit with my husband.
I have so many more recipes pinned that I want to try, but I can happily say that I am out of my cooking rut!
This is super yummy, but I don't know how one can go wrong with a recipe that calls for bacon and cheese.
Really yummy and easy, I just cut a heart out of a slice of bread with a cookie cutter, put it in a frying pan and cooked an egg in the middle. Ella loved it! http://www.shutterbean.com/kalechips/ If you didn't know what to do with kale, now you do! This is super duper easy and a healthy alternative to regular chips. I make them all the time now. http://allrecipes.com/recipe/slow-cooker-pork-chops-ii/detail.aspx These are Jeff's absolute favorite pork chops. He asks for them at least once a week. They are so tender and fall apart when you take them out of the crockpot. http://forkinit.blogspot.com/2010/09/crockpot-barbecue-chicken.html I made lots of crockpot reciepes this month because they are so easy and I can make them to have ready on evenings when I work so my husband doesn't starve. This one turned out pretty good but cooked a lot faster than the directions called for. It was a little dry so I will take it out earlier next time. http://www.sixsistersstuff.com/2011/09/slow-cooker-orange-chicken.html This reciepe was not one of our favorites. It was okay, but I had to modify the recipe a lot. I used less orange juice concerntare and more brown sugar to make it taste better. I don't think I will cook it again, as the local Chinese restuarant has much better orange chicken. http://blogs.babble.com/family-kitchen/2011/02/23/the-best-macaroni-and-cheese-ive-ever-made/ I searched for a new mac and cheese reipe and I wasn't disappointed with this one. It had a good cheesy flavor and the garlic gave it a zesty bite. Yummy! http://www.kalynskitchen.com/2009/01/recipe-for-roasted-green-beans-with.html Easy, delicious veggies as a side for the BBQ chicken dinner. http://www.inspiredbycharm.com/2012/02/very-pinteresting-pasta-pasta-pasta.html
Friday, February 17, 2012
Lollipop
Nicholas does not get to use his sense of taste very often as he cannot eat by mouth anymore. He is fed by a feeding tube that goes directly to his stomach. Nineteen months ago when he did a swallow study before his g-tube surgery, the x-ray images showed that his throat closes and food pools in his esophagus making eating by mouth nearly impossible for him. However, we like to allow him to have tastes of things as often as he likes. For Valentine's Day, his good friends, Grace & Harry, gave the kids lollipops and Nicholas was in Heaven, enjoying the sticky sweetness of his pop. You can see from the photos above that it made him grin from ear to ear. I have since invested in some dum-dum suckers so he can have licks whenever he likes and the small size of the dum-dum fits perfectly in his mouth. Although sucking on a lollipop is a small thing for any other three-year-old, for Nicholas it is one of life's simple pleasures that make for one happy little boy.
Wednesday, February 15, 2012
Ella is 17 Months
Our little pumpkin pants is seventeen-months-old today! She is busy, busy, busy. So much so that I am going to sign her up for soccer on Saturday mornings so she can play with other kids and get her energy out. I was so excited to learn that soccer starts for little ones at eighteen-months, so next month she will start soccer!! They do other activities there are well: parachute, running, and tumbling, in addition to playing with tiny soccer balls so I think Ella will have a lot of fun.
She is in between clothing sizes right now. Eighteen month size clothes still fit but are starting to get too small and twenty-four month size clothes are still a bit too big for her. She takes after her mama in the eating department. She loves any kind of food and tried sushi for the first time last night. She really liked it and we were careful to only give her cooked seafood in the sushi.
Everyday she puts on my shoes that sit by the front door and points to her coat and wants to go somewhere. We try to go for walks on nice days, but unfortunately we don't get too many of those in the Pacific Northwest. She is perfectly content to ride in the car and loves to go to anywhere. Jeff and I try to take her with us as much as possible.
She loves her brother and has taken to kissing his cheeks all the time. She also likes to manipulate with his arms and help him play toys with her. It's kind of adorable. Nicholas loves all the attention she gives him.
Our sweet munchkin is definitely a toddler now and a baby no longer. I miss those precious baby days, but I really love watching her grow and learn in her environment. She is a blessing straight from Heaven!
Tuesday, February 14, 2012
Friday, February 10, 2012
Thursday, February 2, 2012
Mischievous Munchkin
Yesterday Ella got into the pantry and dumped an entire box of Cheerios on the kitchen floor. I couldn't help but laugh and told her with a smile on my face that she needed to eat all of the Cheerios off the floor. She made a good effort munching and crunching the little O's and when her tummy was full, she grabbed the empty box and started stuffing the remaining Cheerios back inside. I tried to help her by vacuuming up the Cheerios, but this must of made her mad because she started crying immediately. Apparently dozens and dozens of Cheerios in ones tummy was not quite enough.
Ella has also proven to be quite the escape artist. Anytime the front door is unlocked, she very carefully and quietly opens the door and makes a break for the outdoors. A few evenings ago as I was driving to work, Jeff called me and asked that I lock the door behind me when I leave for work. He explained that he went to the bathroom and then was helping Nicholas when he realized that he didn't know where Ella was. He walked through the house calling her name and finally saw that the front door was wide open and Ella was staring at him through the glass (screen) door. He picked her up and her socks were soaking wet which made him think she had walked around in the grass in the front yard. She had only been outside for a minute or two but Jeff was freaked out, and rightly so. Thankfully we don't live on a busy street, I would guess a total of ten cars drive down our street on any given day, but from now on we will be keeping the front door locked at all times.
Ella also has ninja skills in escaping from her high chair even when she is strapped in. This morning I went to give Nicholas his morning treatment and left Ella strapped in her high chair after she had finished breakfast. By the time I came back she had wiggled her way out of the securely tightened straps and was standing on the seat getting ready to climb onto the tray. Several weeks ago when she did this, I tightened the straps as tight as they could comfortably fit and lowered her high chair so it is not too far off the ground. I assumed this would keep her safe and secure, but now I know never to question our mini Houdini.
Oh, the joys of parenting a fun-loving toddler. To keep myself sane, I have started reading Love and Logic Magic for Early Childhood, it has been helpful in giving tips on how to be patient and how to give choices to get children to make healthy ones that distract from misbehavior. It is very helpful book, but Ella is definitely one to keep both eyes on!
Disclaimer: The last three pictures were re-enactment photos, which probably completely reinforced her misbehavior, but were a must for her scrapbook. Bad, bad mommy.
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.











