It’s been a while since I’ve shared an update about Joy. Here’s what has been going on recently. 

We finally have a date set for her syndactyly surgery! In case you didn’t know, Joy was born with her left hand middle and ring fingers fused together with an extra fingertip + bone between them. She will be having surgery on March 20 to separate them and remove the extra bone. We recently discovered via x-ray follow-up that the extra fingertip bone is actually fused with her ring finger bone, so this is considered a complex case (although it changes very little about the surgery itself). 

Joy recently saw her ophthalmologist for a standard follow up but a concern led us to getting a referral to see a neuro-ophthalmologist, who confirmed (without officially diagnosing which requires an MRI) that Joy has optic nerve hypoplasia in her left eye, meaning her optic nerve is under-developed. This means while she’s getting a clear image to the eye itself (aka no need for glasses), the picture that is being translated to her brain is not clear due to the weak connection. There is no cure or treatment to fix this, but there are therapies we can do to help prevent further deterioration of her vision. Over time, her brain will want to stop using that eye altogether since the picture is bad, and instead rely solely on her good right eye, resulting in a complete loss of vision in the left eye. But Pirate Joy is making a comeback- patching for 30 minutes 2x a day should force the brain to use the left eye enough to prevent it from giving up on it. Ask me how Joy feels about this… We are also in the process of getting VI (vision instruction) therapy through our ECI (Early Childhood Intervention) case manager. Pray we hear back soon, apparently the wait list is long.

We are also finally getting in with OT, primarily for behavioral / emotional-regulation / sensory help. Whenever Joy gets really upset by something, she gets so emotionally-disregulated that she throws up and tries to hurt herself by hitting her head on things. There is very little I can do to help calm her down so I try to avoid putting her in those situations if I can, but sometimes she really does need to be told “no” or have something dangerous taken away from her. In those moments, she seeks a deep sensory input but in dangerous ways, and we haven’t figured out what other inputs could help calm her down yet. Thus the referral with OT. She gets her initial eval on Tuesday and her case manager is coming by immediately afterwards to get her officially enrolled so that we can start ASAP. 

December was supposed to be our first month since Joy was born that we didn’t have an appointment at Children’s but her last minute neuro-ophthalmology appointment this past week ruined that, BUT we don’t currently have anything on the books until February so it’s looking like January will be it! This is a much slower season than where we were a year ago in terms of appointments in Dallas which is nice and much needed, but with 2 new therapies being added to the 2 we already see, we are feeling just as busy. Thank you all for your prayers for our sweet Joy as she continues to grow and thrive. ❤️