It’s been a quiet month in terms of note-worthy updates, which has been a much needed respite from the chaos the past few months have been! It’s been a nice change of pace, but the start of February will kick off another busy month of follow-ups with a handful of her specialists who all wanted to see her 3 months post-op. 

The biggest thing that happened in the past month was that Joy needed her feeding tube again for a week. She had gone 3.5 weeks without her tube, (4.5 weeks eating great!) when suddenly Christmas Day afternoon she stopped eating. It wasn’t immediately apparent what was wrong. We thought she might have been teething or was getting sick. It wasn’t until I was cleaning her mouth a few days later that I noticed one of her stitches had come out. That’s when I remembered the timing was right for that and realized her mouth must be sore/tender from it which is why she stopped eating. I was worried she might become tube dependent after we put her tube back in but it was only in for 7 days until she was back to normal! 

The experience taught us a lot: mainly that she’s otherwise done with the feeding tube for good! Her feeding therapist is now working with her to get her used to different feelings/sensations in her mouth so as to set her up for success in preparation for her palate surgery in May. Joy will need to be able to eat despite tenderness/soreness after surgery and placing her feeding tube back in will not be an option, so it’s critical that Joy gets to a point where she’s able to bounce back quickly. But I’m really hopeful that Joy will get to that point because she already crushed the goals her feeding therapist set for her last month! 

After some paperwork delays, Joy finally started physical therapy too today. Her PT originally suspected she was developing torticollis which is why she favored one side over the other (she won’t roll or turn one direction), but after her session today the PT discovered extreme tightness in one shoulder area from a possible swollen lymph node or ball of muscle. We’ll be doing daily massages of the area to see if that helps loosen it up. She also noted that it appears Joy’s left brain is talking to the right just fine, but the right is not talking to left as much. We’ll be doing exercises to make progress in that area too. 

Tomorrow Joy has an appointment to take measurements for a new helmet because she has already outgrown her current one! Her orthotics doctor was shocked to see how little room was left in the helmet at her last appointment and started somewhat panicking trying to get an order for a new helmet from Joy’s cranio surgeon a month earlier than anticipated. Joy will get her new helmet on the 27th! She should have this one for longer- several months but I don’t remember how many- before needing her 3rd and final helmet. 

Thank you all for the continued prayers for our sweet Joy!