Today we had Joy’s major Craniofacial Team appointment, which happens once a year from now until she’s 18. This appointment involved every specialty on the team: ENT, psychology, dentistry, feeding/speech, social work, and her surgeon. It is looking like unless something crazy happens in the next 2 months, Joy’s palate surgery will be scheduled for May 29. This surgery will close the hole in the roof of her mouth so that she can start to learn to eat normally as well as allow her to make certain speech sounds she otherwise is unable to make (like the B “buh” sound, etc). We are looking at a (hopefully) one night overnight stay at the hospital for recovery. What will affect our ability to go home afterwards is how quickly she bounces back to eating her bottles so as not to dehydrate or starve. We all know how much of a challenge feeding has been for Joy so please be praying over this for her! 

Other noteworthy updates: 

Joy has made incredible progress with her helmet in just under 4 months! Her head shape is just about where it needs to be- Orthotics is just fine-tuning at this point! The helmet’s purpose is now to stabilize the growth of her head to ensure the shape stays proportional. Her doctor said there is a possibility (not probability- but we can pray!) that she can finish helmet therapy early if she grows out of her current helmet between her birthday (July 29) and the projected completion date of 1 year post-op (Nov 11). Grow Joy, grow!! 

Joy’s teething issue has persisted with only 3 days of respite in the past nearly 2 months. Her feeding therapist has observed if Joy is visually distracted while she eats so her focus is off the fact that her gums hurt, she finishes her bottle without issue. We have gone to quite the great lengths to distract her, but it (usually) works! Our current mantra: anything to avoid the feeding tube 😅 

From a PT stand point Joy has caught up on all of her motor skills! She’s crawling, although without much aim, and is sitting supported now! The issue we have come across, though, is that Joy officially has torticollis. She has a fairly significant head tilt and it has started to affect her head shape, despite the progress she’s made. We have been trying to stretch her neck muscles so that her resting state is more midline but she does NOT like the stretches whatsoever. It is looking like we will need to start doing kinesiology taping to help move the progress along. Please pray we are able to make more progress in this area! 

Thanks for the continued prayers for our girl! 💜