Thursday, August 22, 2013

Boating is the Best!

We have been out on the Columbia River on Chris & Eva's boat a handful of times this summer and our entire family enjoys it immensely. There's nothing like sun, sand, and water on a warm summer afternoon!


Alex and Ella found some sticks to play with, 


while Nicholas kept cool in the shade and cheered them on.


It was a family affair with Kris & Jami


Chris & Eva


Cousins Ella and Zoie


Ella and took at photo of our sand shadows. Ella thought it was so cool that we could see our shadows!



 I am so blessed to have these two beautiful women in my life. I grew up with two brothers and always wanted a sister. Marrying Jeff gave me Eva and Jami and I am forever grateful to have them both in my life. 


I guess no one else got the memo that it was silly face time. 



Ella loves being buried in the sand...



And busting out!


 Brother-in-laws


 Nothing but sand and sky as far as the eye can see


Later Zoie took some photos of us when we weren't paying attention...



but finally got a decent one of all the adults after a few tries. 


On the way back to the marina, Ella demanded to sit by her cousin and wear some shades because the sun was so low in the sky. 



Nicholas loved sitting next to cousin Alex and Alex loved it too. 


 We feel so blessed to be able to spend hot summer days on the water with our amazing family. Beautiful memories have been made. 

Monday, August 19, 2013

Odds & Ends

One of my co-workers' daughters had outgrown this cute car so she offered it to Ella. It's called a "Cozy Coupe." We picked it up last week and Ella cannot get enough of it. She thinks it's so much fun to open the little door, put treasures in the little trunk, and use the hose to pretend to put fuel in it. It was even more fun when cousin Alex was over last week and pushed Ella all around the backyard in it. Thank you so much Laurie & Maeve!!


Last week Ella had to go to time-out in her bedroom because she put a bunny graham cracker into Nicholas's mouth while I was preoccupied in the kitchen. I know she was trying to be little mother hen that she is, and she said they were playing "kitchen" but she also knows that Nicholas cannot eat by mouth and she knows that she is not allowed to feed him any food at all. So I told her she needed to sit on her bed in time-out and when I checked on her several minutes later, she had fallen asleep. It's rare that Ella will ever take a  daytime nap so I can assume it was much needed. I think she is going through a growth spurt because she has been extra clumsy lately as well. She's less than a month away from turning three...I can't hardly believe it. 
A couple of weekends ago was the annual candle lighting for Spinal Muscular Atrophy since August is SMA awareness month. We lit our little candle for Nicholas and all those adults and children fighting every day to defy the odds and beat this disease. 


Ella's bedroom got a mini transformation when we bought her a new big-girl bed and dresser. A good friend of mine bought her old crib and changing table/dresser which allowed us to buy these two great antique pieces for her bedroom. 

I found this bed one Friday a few months back on Craigslist after searching for just a few hours. The whole family took a drive into Portland on Saturday morning to pick it up and we got an amazing deal! A church friend of ours donated the twin mattress and box spring, I ordered new bedding and, voila! Ella has a brand new bed. She absolutely loves it and no longer sleeps with us at night, which is a bonus for everyone. 


I also found this adorable antique dresser at a local antique store for an exceptionally low price. I paid cash for it, brought it home, Jeff removed the casters from the legs, and I put all of Ella's clothing into it. I think it looks great with her new bed, they compliment each other very well. 


I picked up a bag of chocolate chips when I was grocery shopping a few weeks ago and normally I just eat them by the handful or I make my own Reese's combo by getting a big scoop of peanut butter and sprinkling chocolate chips on top. This time, however, I decided to surprise my husband and make some homemade chocolate chip cookies with both kids. I searched Pinterest for "The best chocolate cookie recipe EVER" and found one that sounded tasty. The kids loved mixing and measuring, then watching the cookies rise in the oven. And it really was the best chocolate chip cookie recipe ever. They were absolutely delicious!


After we made cookies, I decided to make another dish that we don't eat too often. Stir fry. I added as many veggies as I could find from our produce drawers in the fridge and some pre-cooked BBQ chicken from a previous dinner. Needless to say, my husband thought I was a domestic goddess that day!


The summer evening sky has been absolutely breathtaking lately. I love to sit on our backyard patio and enjoy the warm summer evenings because before we know it, we will be back to all the gloomy Pacific Northwest rain. 


Our sweet neighbor brought us these deliciously sweet cherry tomatoes last week. They were gone in a matter of days because we couldn't get enough of them. Keeping my fingers crossed she brings some more over again soon!


Last Monday, my good friend, Katie, invited the kids and I over to her house to swim in their pool. It was a beautiful eighty degree summer afternoon and we had a great time! Ella started out wanting to swim in this baby float...


but then she started becoming more adventurous and wanted to swim on her own (in her life jacket, of course). 


By the time we left a few hours later, she was swimming all over the pool all by herself!


Nicholas went into the pool with me once, then he was perfectly content to sit in the shade, curled up under some beach towels, watching Ella swim with Gwen and later he watched a movie on the portable DVD player.



The Lewis' puppy, Blitz, joined in on the swimming fun at one point, too!


 Thanks, Katie, for having us over, we all had a super fun time!!

Friday, August 16, 2013

SMA Buddies

A couple of months ago we had the pleasure of meeting a sweet little boy named Bryce Amiel, and his mama, Jenni. Bryce was recently diagnosed with SMA just like Nicholas, so while it was unfortunate to connect the way we did, we are happy to have found new friends. Bryce is a darling boy and his mommy is fighting to get him the medical equipment he needs to be healthy and thrive. You can see how happy Nicholas was to meet Bryce. He absolutely adores babies, especially ones as cute as Mr. Bryce!


Just a few days ago we had a visit with the VanderZanden family, who has a daughter named Kayla, who also has SMA. Kayla is just three weeks older than Nicholas and the VanderZandens were the first family (who has a child with SMA) we met after Nicholas's diagnosis. Shawna, Kayla's mommy, I just adore. She's super helpful with advice about diet and supplements for our kiddos and she is a constant source of uplifting support for me when things get tough, because she knows exactly how I feel and she can completely relate to the emotional roller coaster we are on while raising a child with a terminal condition. 


Shawna, Kayla, little sister Emmy (who's 6 months older than Ella and also SMA free), and nurse Carrie arrived to our house around noon so we enjoyed lunch in the backyard and then the kids wanted to play in the pool. Nicholas and Kayla sat next to each other and played with some of the balls in the pool while Emmy and Ella splashed (but not too much). 



Nicholas gets a little quiet every time he is around Kayla. I think he gets shy because he has a crush on her. He told me he thinks she is beautiful and so nice. Awe. Isn't that the sweetest?!


I just love Little Miss Kayla. She's the sweetest! She is so amazing as she continues to keep a lot of her strength. She is still able to drive a power chair, play with toys, sit upright most of the time, and eat by mouth. I am inspired and so impressed with how tough she is!


After the dip in pool, Shawna gave the kids the Dum Dum lollipops she brought with her. Nicholas hadn't had one in several months so he was super excited to suck on his sweet, sticky treat. 



 Thank you for visiting Amiels and VanderZandens! We have such a great time with all of you!!



Thursday, August 8, 2013

August is SMA Awareness Month




Our family is huge supporters of the Gwendolyn Strong Foundation, and really, the Strong family in general. Victoria Strong was the first SMA parent to reach out to me after Nicholas's diagnosis, offering me support and valuable information about care options when I desperately need it.  Bill & Victoria do such wonderful things for the SMA community: raising awareness, offering advice to newly diagnosed families, granting iPads to kids with SMA, and raising hundreds of thousands of dollars for research to help fund a treatment or potential cure for Spinal Muscular Atrophy. 

August is SMA awareness month and the GSF came up with these creative illustrations to show that one in every forty people is a carrier of the disease that causes SMA. I wanted to share here for all our readers who may not have seen them posted on Facebook. Great job, GSF! For more information about how to support this wonderful foundation, check out their website HERE

Tuesday, August 6, 2013

Ushering In August

At the beginning of the month, we went to Doernbecher's Children's Hospital at OHSU for Nicholas's annual feeding clinic appointment. The kids enjoyed watching the fish in the aquarium in the waiting room before we were called back to meet with the doctor and nutritionist. So many blessings came from that appointment! We were able to switch enteral supply companies from one with horrible customer service to one that makes monthly food orders automatically for us! I am beyond grateful as the former company has been a constant headache for me and manging Nicholas's monthly feeding care became like a second job. Also, Nicholas had some labs drawn and the labs came back showing that his diet is working very well for him. We just need to add a few things that he is lacking: vitamin D, Omega 3s, and sodium. So, it was a wonderfully productive visit, which made mommy super happy!
The first few days of August were cold and a bit rainy so we spent some time indoors and the kids enjoyed painting with watercolors and playing indoor games. 


Last Friday we went over to my parents' house for dinner and Ella got to play with her little buddy, Leah, again. Leah's mommy works with my dad so we enjoyed chatting with their family while the girls played. Ironically, both Leah and Ella have the exact same Plasma Car so they zoomed and raced all over the deck together, laughing the whole time. 


Nicholas enjoyed watching the girls and cheered them on while they raced. 


On Saturday, the sunshine finally made an appearance in the late afternoon, so Jeff's sister and her husband invited us out on their boat again. 

Ella is starting to become a bit more adventurous in the river, floating on her back in her life jacket. 



I love my husband dearly. Every single time we are on the Columbia River together, I get nostalgic about when we met there eight years ago. He still gives me butterflies every time I see him, and makes me so proud to be his wife. 


Nicholas beat the heat in his "Beach Hunk" tee shirt, under his umbrella, with his hat on his head and shades on his eyes. He loves being out on the water as much as the rest of our family and we are so happy to offer him fun, simple, days where we are all enjoying time together as a family. 


Isn't this gorgeous?! I cannot get over how stunning this place we call home truly is. 


A Halloween costume catalog arrived in yesterday's mail and the kids were having such fun pouring over the photos, trying to decide which costume they want to wear for Halloween (which seems so far away to me). They finally decided Nicholas would like to dress as a knight and Ella would like to be a princess. This all makes my heart happy because I love when they want to dress similarly. I am thinking that we can use cardboard and decorate Nicholas's stroller like a horse to add to his knight costume. Before then, we plan to enjoy the last couple of months before summer ends!