Unpredictable ONE

 


We had a busy week this week! Between doctor's appointments(both scheduled and unscheduled) and our first meeting with our Early Intervention Physical Therapist......we're just grateful for a chill Friday.

Monday was just one appointment at Nemours - and hour and a half drive, but it was good! The Pulmonologist said she sounded great, and wanted to experiment with bringing her vent support down a little bit more by deflating the cuff of her trach. Sunny's trach has a water-filled cuff that, once the trach is in place, gets filled to seal off her trachea so that no air escapes. By doing so, it cuts off air from getting to her nose, mouth and vocal chords. 


Deflating the cuff - he suggested for a few hours a day while she's awake - will allow her to breath a little bit more on her own through her nose and mouth, in addition to her trach breathing.
We're excited to try it, and also quite excited to be able to hear her a little more:)



Tuesday was rough, and she was getting more and more similar to how she was during her last UTI. She was pretty normal at night, but was nauseous & fussy during the day. So, when she continued that trend, Chris decided to stay home Wednesday so that he and Sunny's beloved in-home nurse could take her to her pediatrician's office to test for a UTI. They got us in same day, and the wait wasn't NEARLY as long as waiting in the ER. Unfortunately, she tested positive for another UTI, and was prescribed some oral antibiotics. They sent the urine for a culture to narrow down which antibiotic would help fight it off more precisely, We still haven't heard back from that, but we're prayinggg we won't need to be admitted again.  

Thursday, we trekked back out to Nemours. Sunny wasn't quite as angry about being in the car, but still didn't love it. She did amazing in both appointments, falling asleep on both exam tables. Her appointment with GI was quite eventful in the best of ways - they took two of her meds off her rather massive lineup, and they said she's growing so much that they'd feel comfortable adjusting her feeds from 24/7 to 20 hours a day - giving us a nice 4 hour break of one less thing attached to her. 
Her nurse and I laughed after the appointment because while we were waiting, we discussed asking them if we should increase her feeds since it hadn't been increased in a few months.
She's in the 90th percentile for weight and length, which is pretty crazy for someone the doctors said "I don't know how she's here past the first trimester" about and then gave a 5% chance of survival past pregnancy. 


So, while we're still bummed (& confused) that another UTI has returned so quickly, we're excited that there are some areas that her body is doing well in!


OH AND SHE TURNS ONE YEAR THIS SATURDAYYYYY!!!!!
We are just so grateful and beyond thrilled. This is a milestone we didn't think we'd see when we were given her diagnosis. 
Before she was born, we had a myriad of possible outcomes that we were "planning" for. From her not making it to birth, a few minutes after birth, days, months...but to get to one whole year was one we hadn't been very likely at all. Yet here were are. I'm just gonna cry all weekend. Life with Sunny is the hardest thing I've ever done, but I'm so grateful for her and the time I get with her. Even when we're both crying at each other in the middle of the night, or driving 3 hours for 1 appointment, or having my phone filled with alarms for medications, and machines beeping at us for attention throughout the day. She is precious. She is a light. We wouldn't have chosen her life to be like this, but it has allowed us the gift of really cherishing whatever time we get with her. We can't assume a full life with many years - we can't even assume Thanksgiving or Christmas plans. She's truly forced us to just life day by day, which helps us not take all our days with her for granted. 


We're immensely grateful for you, for your care and prayers for Sunny and her parents. We feel, and have felt, so loved and seen. 

Prayer Requests:
- For general health during these winter months for the Good household
- For the UTIs to stay away longer, or for us to figure out how to help prevent it better. 

Thank you!

Love,
Chris, Alyssa & Sunny

Always with the hands 

Major getting it done 
 by whatever means necessary



Night shift selfieee

👀

Lots of naps this week, baby girl recovering and GROWING 💪


Night shift setup 

Living her best life



Sunny at the "Sunshine Module"

Nap between appointments

Nurse Erik always has music or Finding Nemo ready to go for Sunny, even on the road ♥️






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