So much has happened since the post-op in June! 

We started adding avocado oil to Joy’s bottles after the weight scare at post-op to give her extra calories and it worked! Joy’s subsequent weight check with GI had her up to the 19th% for weight (it had previously dropped to the 15th%), but they went ahead and made the decision to move her from her breastmilk mixture fortified with infant formula to a pediatric formula. It’s not over the counter, which means I’m re-entering the world of medical supply companies and insurance issues 😭 We’ve already been trying for nearly 2 weeks to get our first shipment of formula and we’ve made extremely little progress, but Joy’s dietitian was able to connect with a rep from the manufacturer and they’re going to be sending us a small supply of samples to hold us over! 

Today we’ve had a marathon of appointments- 4 to be exact! At her helmet adjustment today, her orthodics doctor hit plastic!! That means Joy is really close to growing out of her helmet! We have an appointment with her Craniofacial surgeon in mid October who will evaluate the progress the helmet has made; her orthodics doc said she can adjust the helmet in a way to last until then, but she won’t be able to make it last to the originally expected end date for the helmet (mid November). There would be no point in manufacturing a new helmet for just a month, so we should be finishing helmet therapy a month early!!! Big praise!! 

Joy has a new lump on the side of her left foot; we had it looked at by her pediatrician yesterday who sent orders to get an x-ray done today. The x-ray came back normal for any anomalies so we aren’t exactly sure what this is. I’m waiting to hear back from the pediatrician for what the next steps should be, but I believe a new referral to orthopedics (foot specialty, she already has a hand specialist we’re seeing😅) is in our future. Please pray for answers regarding this! 

We saw Joy’s eye doctor this afternoon who is baffled by Joy and her left eye. After 4 months of patching, her eye made some progress in its ability to focus and track, but is still struggling. At this point he is theorizing she has optic nerve hypoplasia (ONH) despite previous tests coming back as seemingly normal, which is the under-development of the optic nerve and is not uncommon in kids with Agenesis of the Corpus Callosum. He wants to do an MRI focusing on her orbitals to take a look at her entire optic nerve (not just the end of it), as her previous MRIs have not done this, but this would mean going under anesthesia AGAIN, so we are holding off for now and will reevaluate in a few months when we go in for another dilation. Prayers for clarity and direction in this regard too! 

Thank you all for continuing to pray for our sweet girl! We can’t believe she is already a year old 🩷What a year it’s been!