I am a messy work in progress.
And so is my life... which this week included a trip to the ER, a trip to the cardiologist, family pictures, a baby blessing, and the go-ahead to get this dang surgery scheduled (date TBD). Also, I heard it was the Fourth of July? It’s cool. I’m fine. I’m fine! 🤪🤷🏼♀️😂😵 #wewillsurvive #butwillwe? #Imlosingallmyhair
Lydie Update:
She is now 4.5 mo old and weighs 11 lb 11 oz. She eats like a bird (a very slow bird) but thanks to the high calorie meals we keep gaining ounces one by one! We BARELY escaped a feeding tube again this week. If you’re wondering why we’re fighting that so hard, it’s because children can become dependent on feeding tubes and develop oral aversion—they can either disassociate hunger and swallowing or may not want to eat orally after being fed by tube. And, since muscle development is slow in kids with DS anyway, we are doing EVERYTHING we can to keep those oral skills in place, which will help with eating/speech later on! So the 90 min meals continue 💪🏻 Another new development is that she is reaching for everything which is so fun!
She also works on her (assisted) sit ups and core strength daily (see stories) so this girl’s on quite the regimen! The last 2 pics are from our cardiology appointment on Monday. She got blood work and her pre-op echo done, and we are just waiting on the hospital now to schedule surgery. Half exciting, half terrifying, 100% surreal. Just soaking her up and trying not to think about it too much. ❤️
