Sunny Days

  Sunny's week was cozyyyy. Her Majo & Aunt Jadyn came to help us in our hunkering down for the winter storm, and it was lovely. Even IF we had weekend nursing, they most likely wouldn't have made it through the snow, so it was amazing to have their extra help this last weekend.  This week, we had an appointment to get measured for another helmet!  Sunny outgrew her first helmet during her "summer of puke days", but now that she's doing better in that area, we're hoping to try again! Who knows how she'll respond, but we're hoping it'll aid her in keeping her head a little more midline & in general help with her neck muscles.  Every Tuesday, her physical therapist, Erin, comes to work on stretching and strengthening her neck muscles. Because of Sunny's trisomy diagnosis, her muscle tone is very low, and she's still very floppy. Since she's getting older and bigger, it's getting harder to lug her lovely self around:) So, our f...

  Last week, Sunny's nose swab results came back & showed that she had RSV. THANKFULLY, she was through the worst of it - her pediatrician called to make sure we saw the results, and said we should be over the brunt of it - but we should just expect more snot as she's clearing everything out 🙌. Sunny Alsoooooo got her first tooth!!! The poor pumpkin was fighting off RSV ANNNNND teething!!?! She's just such a trooper.  Other than that, it feels like we've mostly been hunkered down in survival mode. She had a very sleepy and snotty weekend last weekend, but was otherwise pretty much herself. But the last couple days, her heart rate has been more elevated & she'll have random spurts of fussiness, & we don't know what exactly is causing it. If ONLY parents could know what exactly is making their baby upset - I think it'd be so much easier to wait it out/make whatever changes to help the situation.  Just like a lot of the East Coast, we're gearin...

  Sunny is fine - she's seemingly sick with something, but this week was rougghhhhh. She was starting with discomfort and pukey-ness over the weekend. It was hard to tell if she was coming down with something, or if teething was wrecking her little body.    Monday, we had an appointment with neurosurgery to get a prescription for another helmet. Between all her vomit days during the summer she was inpatient and had her cute purple helmet, she'd outgrown it. Sunny was pukey, and mad about being in the car. It's about 1.5hrs one way, and she was tachycardic to and from. Once we were home again, I was anxious to get her inside and comfortable so she could nap and recover. I think I was so focused on that, that when her GJ-tube got caught, I didn't noticed until it had popped out. I still feel so bad, and ridiculous for doing that. I'm usually so cautious when moving her, and hyper-paranoid when other people are moving her. Sunny's angel of a nurse immediately reass...

Goodness. Being a parent during the holiday season is no joke. Even with two full-time nurses giving us extra help throughout the week, it still feels like we have a million tabs open in the brain & things slipping through the cracks.  Sunny had a wonderful (first one on the outside of the hospital) Christmas!  We were able to pack all of ourselves up, drive a little over two hours in Sunny's new(to us) minivan, and enjoy some much needed family time.  We saw lots of cousins - some of them in it the first time in person(!), and took a lot of naps on couches. Sunny got some new toys and new outfits for Christmas, and a cushion to help position her more comfortably.  We were anxious about sickness as it seems to be rampant right now, but I always struggle with wanting to keep her in a bubble of safety or having her experience these things. Even when she was a tiny bean in the CICU - there was one nurse that would make subtle remarks about the visitors we had. But b...