Party Week



 

Sunny had a great week! Both of her parents have birthdays this week, so it's been somewhat fuller than normal and she's been a gracious lil champ.

Monday, she had her helmet follow-up, where he verified the fit was still good, & made a small repair. We then went up to 2B to see our friends! Everyone who walked up to see her, almost immediately, said "Sunny, you're huge!!!" 

Despite her feeds decreasing from 24/7 to 18/7, she's still managing to stay on the higher end of the *typical child* growth chart. Her PCP said how there wasn't really a growth chart for trisomy 18, but growth was usually slow. Sunny has 99 problems, but growth has not been one. 

This week also had a couple Trisomy awareness days - because March is the third month, and TRIsomy  is a genetic condition characterized by the presence of three copies of a specific chromosome instead of the normal two. And then specific days highlight particular trisomies - like March 13 for Trisomy 13 (Patau Syndrome), March 18 for Trisomy 18 (Edwards Syndrome), and March 21 for Trisomy 21 (Down Syndrome). While most of Sunny's cells are affected by Trisomy 18, she also has some affected by Trisomy 13.  


Other than some birthdays and awareness days, we've had a pretty relaxed week. Unfortunately, it hasn't been nice enough to go for any other walks this week, BUT hopefully that will change as it's the first day of spring! 



Prayer requests:

- general health for Sunny

- night nursing for weekends 


Thank you so much! Your prayers mean the world to us. We continually feel overwhelmed with gratefulness that Sunny is still here. She's been through so much, and statistically "shouldn't" be here. But she is and we love spending our days with this crazy lady. 


Love, 

Chris, Alyssa & Sunny


One of Sunny's favorite nap buddies, Aunt Nell, came for the weekend

Wearing a T-shirt & pants (vs onesie) always makes Sunny look like she needs to go backpack shopping for school. 



Sunny's previous nurse, Erik, came by for a visit this week!! It was SO nice to see him again♥️


👀

See? SO BIG??!?


Passed out after our church small group again:)

Love it when she holds onto her helmet like that haha





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