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.
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