6 months!!




She's officially one whole (Sunny) handful of fingers!
Half a year old is wild. Time is going very quickly, which seems crazy to say living in a hospital. Her getting older seems to be going quickly, but living in a place that is not our home is not. 

    She's been making progress and we're moving in a direction that is getting us closer and closer to going home! She's been doing well with the medication wean - she's still on a decent amount of meds, and she's technically able to go home while still on this medication, but the doctors were trying to simplify things for us and her by seeing if she'd be able to go without.


Just in time for her half birthday, she was given a teeny amount of milk through the g-tube! If she continues to do well with those amounts, they'll continue to increase how much goes through the g-tube:) The goal is to be able to feed her full volume solely through the g-tube. 

She's also still rocking all the ventilator things! The pulmonary doctors were by again, and said that they're going to lower her automatically given breath rate to zero. After it had been lowered a few times before, she was at a rate of 10 automatic breaths per minute.  She is always breathing over that, she initiates a breath and the ventilator senses that and gives the breath, the 10 breaths were given in addition to whatever she was initiating.  But Thursday, they said they're making that rate to zero, which basically makes the mode change to basically a CPap!


Someone came to fit her for a stroller/wheelchair with support to help her sit more comfortably. The tech that came to fit her for the chair caught her at just the wrong time(as she was trying to put herself to sleep), and they kept having to pause to rock the chair back and forth to calm her. Sunny wanted to go to sleep, and was a tad irate about being taken out of bed:)
When the tech left she said, "Bye, Sassy! I won't forget you, that's for sure." 
She knows what she wants, and she knows what she does NOT want - which she's an excellent communicator of. 



Prayer requests:
- She'd carry on tolerating g-tube feedings well, and her digestive system keeps moving healthily.
- Continued wisdom & guidance for all Sunny's caregivers.


We're anxious to be home, and we're grateful for our reason to be here. Thinking back to that first week we were given her diagnosis & prognosis, it's crazy to think that we're halfway to a year with our Sunny girl on the outside. She's amazing, we're constantly in awe of her and her resilience. We feel so much love for this girl AND we feel so loved by so many. We're very, very grateful and feel so humbled and so truly blessed by you. 


Love,
Chris, Alyssa & Sunny





Even though she slept through most of the visit,  she got to meet more cousins this week!!!💛☀️💛


Sunny had her first play date with PT, OT, Child Life, and 2 other kiddos!



They all just sat and stared at each other at the beginning:)



Today, she immediately turned her head and made eye contact as I walked in.


All her friends here at the hospital helped celebrate her half birthday! Child life made this sign and dropped off some decorations...


...& night shift Nurse Alayna made Sunny this sign:)


Then some of Sunny's bffs came to eat some cake and spend time with her!



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