Sunny Days

Sunny finished up her course of IV antibiotics and was cleared for takeoff. This round was much simpler than our first and we got to leave in our own car, together as a family.  Thankfully, this week too was simple. We have a nice little break before her outpatient appointments start back up again, which has been nice to get ourselves resituated. It's SO nice to be home and even though we're exhausted, we're so grateful.  Sunny has been back to her normal self. Her in-home nurse has commented several times on how much better she seems. She was pretty sleepy the first couple of days home, but she's having some more awake days lately and that's fun.  We had our initial evaluation with Early Intervention on Thursday, and we're so excited to continue her PT workouts with them. Our first goal is helping her neck strength . It's definitely gotten better - even in the last month, but she's still needing a lot of support throughout her whole body. I'm ex...

  Sunny got a goooooood visit in with her besties this week! We came in to the ER last week because Sunny wasn't herself, and she was then admitted to treat a UTI.  Antibiotics were quickly started while we waited for results that would help us narrow down which specific antibiotic would fight it off. Once they found that out, they were able to start her on some that would target the infection best. There was no oral substitute for this antibiotic, so Sunny received it via IV, and the team thought best to give her the longer 7 day course verses the shorter 5 day option. They wanted to err on the side of caution because, "It's Sunny" - she's the favorite;) annnnnnnnd she's not likely to do what you expect her to. We finish up the IV antibiotics today, and we're planning to hopefully go home tomorrow!  It was really very sweet to see all of our dear friends again, and Sunny took full advantage of that and got herself lots of snuggles with them:) We'd app...

  This week, Sunny reminded us to take her on more walks outside. Over the weekend, Sunny was rather retchy & that is sometimes pretty normal for her. People know she gets her usual "retch day" and her heart rate increases and she just is uncomfortable. It usually subsides, her heart rate normalizes and she gets back to her normal self.  Saturday Sunny was veryyyy fussy. We tried all the tricks of giving her comfort, but the only one that worked was holding her(which we didn't hate:). It was sweet, but not her normal. Thankfully, she was able to sleep well that night, and while she wasn't back to her regular self on Sunday, she was less fussy and after her afternoon nap her heart rate was closer to where we liked to see it.  Tuesday, we were in for some outpatient appointments & went up to visit our 2b friends afterwards. It was so sweet to see some of fave peeps! On our way out, Sunny's in-home nurse commented on how loved she was ♥️. She must've enjo...

  Sunny had a good week!  Sunday, we took her to church for the first time on the outside. While it felt rather hectic gathering all her gear, finding parking, and coordinating the elevator ride, it also just felt so good. Sunny was a champ and did so well for most of it, and then eventually joined the other parents soothing babies in the hallway. We then introduced Sun to the after church tradition of walking with friends to a local cafe for an after church latte. Sunny is so content when on a walk, especially with this perfect fall weather. She just watched the trees and sky, and would have fallen asleep if it weren't for the occasional wonky sidewalk bump, or loud passing cars.   It was a good walk, and it just felt so wonderful to finally take her to church after all this time and prayer.  We went to her first outpatient cardiologist appointment. Like the pro that she is, she fell asleep during the echo:) but then kept trying to fall asleep after that, but w...

 We had a lot of firsts this week!  First walk outside without the security of our hospital posse, first time eating out with Sunny(once we got all her gear packed up, we thought we ought to make it worth it and walked to dinner), first time taking her in the car(on the way to meet her pediatrician for the first time), and first time meeting her dog sistas! It's weird getting used to doing all these things on our own, trusting our minds and education to remember everything we're supposed to do/have on hand.  Things still feel chaotic and we haven't fully unpacked from living in DE for 10 months, but for right now, this is all I got:) We'd appreciate prayers for - Filling the in-home nursing needs. We're still trying to figure out what(& who) to help us best care for Sunny. - General health for the Good household Love,  Chris, Alyssa & Sunny Sister nap  You know she's the most relaxed when her tongue is out for sleeps.  This girl loves windows and lo...