One month out from palate surgery and things are going, well, not as we had hoped. Feedings have not improved. Her top tooth came through at the end of last month which caused her to stop eating for nearly a week, again. We were on the brink of putting her feeding tube back in to keep her from a trip to the ER, but we barely managed to keep her hydrated by using a syringe dropper. We learned a lot that week on how to get fluids into Joy while she’s in extreme discomfort that I hope still work when she’s recovering from surgery. We finally got to see Joy’s pediatric dentist at Children’s and her dental x-rays look insane. They confirmed her non-stop teething since January has been caused by her MOLARS moving significantly, and her 2nd top tooth is pointed directly towards her palate. We are still a ways out from that one coming through, but we can’t tell yet if it’ll come through her palate or come down straight and just be crooked. 

We also made the realization this month that Joy likely has oral-sensory defensiveness, (common in individuals with Agenesis of the Corpus Callosum) which is characterized by a heightened sensitivity to textures and tastes, making it challenging to accept a wide variety of foods. Joy is nearly 9 months old and still won’t touch solid foods of any kind. Not by spoons, mesh feeder, by hand/baby-led-weaning, or even on my finger/rubbing tiny bits of mushed food on her gums. No breastmilk popsicles, banana, avocado, applesauce, sweet potato, baby puffs, etc… you know, all the foods babies love eating at 6 months old 🙃 She rejects everything we’ve tried for the past few months. Her feeding therapist has pulled out all her tricks, but Joy is stubborn. We are continuing to work with her on letting her explore foods but the hope she would be eating at least soft foods during surgery recovery has died. 

Switching gears… we had previously seen an ophthalmologist in October prior to Joy’s surgery to clear her of any eye pressure issues. She had gotten the green light for surgery but was scheduled for a follow up to make sure there weren’t any other issues. I had been totally nonchalant about the appointment, thinking the eye doctor would see that her strabismus (bouncing eye) was mostly resolved following the surgery (as he had predicted). It turns out the very fact that it’s only most resolved and not completely resolved is an issue. The eye muscles in her left eye are extremely weak which affects her ability to focus and track with that eye. As a result, we have begun eye patch therapy: once a day for 2-4 hours Joy has to wear an eye patch on her “good” right eye, forcing her left eye to work hard. It’s been heartbreaking to see Joy freak out so much from feeling so lost, but I have to remind myself it’s for her good. The alternative is strabismus surgery which I would like to avoid at all costs. I don’t fancy the idea of putting Joy under anesthesia AGAIN if we don’t have to. 

On a much better note, Joy has completely taken off with her gross motor skills! She started crawling, sitting up on her own, AND pulling to stand over the course of just a few days between PT visits. Imagine the look of shock on her therapist’s face when she came for her following session! 😂 We’ve officially switched our PT goals from improving gross motor skills to fine motor skills. So we’ve got one thing going for us this month 😅 

We don’t have any appointments on the books (say whaaaaat???) until her pre-op on May 19, so there will likely not be any updates until surgery time. That’s something mind blowing to think about. Thank you all for the continued prayers for Joy!