I’ve made this Support Registry to keep all our updates and list of needs (so many of y’all have asked how to help- thank you!) in a centralized location. I will continue to post updates on Facebook but they will be less frequent as the updates I’ll share here. 

We are getting ready for Joy’s big surgery on November 11. She’ll be getting her lip and nose repaired, ear tubes placed due to fluid buildup, as well as a strip craniectomy (cutting out a piece of her skull where there is early fusion). Even with the big day ahead, we feel at peace because we know the Lord has her in His hands! We still have a lot going on with appointments: now with UT Southwestern too who will be managing her skull-shaping helmet post-surgery. We will be getting fitted for her helmet this upcoming week. 

At Joy’s appointment this past week she weighed in at 11lb 8oz which is the 25th%! That was nearly a whole pound more than the previous week! She has now officially broken out of the mid-high teen percentiles which she’s been stuck in for over a month. The goal is to get her caught up to be at least in the 50th% since her height has been around the 70th-90th%. 

We are also making progress on getting a referral processed for a pediatric home health care private duty nurse. This nurse will help me (Grace) take care of Joy at home, particularly when Daniel is at work. I am coming to terms with the fact that I have been doing the work of 2 people on those days, as Joy requires lots of special hands-on care.  

We've also reached out to Texas ECI, which stands for Early Childhood Intervention. They will evaluate Joy soon because we have already noticed delays in her development. We expect PT/OT to start making visits to our home to help Joy get caught up. 

We truly appreciate all the support and prayers. If you'd like to follow our journey, spread the word, and see how you can be part of this support network, please join us and check for updates often. Thank you for thinking of us!