Support Registry Update

Update 3/4

In support of
Joy Brown and Family
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Joy’s surgery got rescheduled to April 3 (Good Friday😭) so we are now officially less than a month out. We had to add 2 additional procedures / surgeons into the schedule, thus the need for a date change. Joy will be getting the following procedures 
  1. Syndactyly surgery- separation of her fused fingers / removal of additional fused fingertip bone. This was the first and primary surgery she’s getting. 2 week recovery in a full arm cast on her dominant hand/arm. 
  2. Eye muscle surgery - tightening the loose muscles in Joy’s left eye to stop it from rolling around when she looks to the sides / up and down. 2 week recovery, red eyes but no impact on vision. Today we met with the surgeon who will be performing this procedure and she observed Joy’s eye muscles in the right eye seemed tighter than they should. She will take a look at them while Joy is under and if they are in fact tight, her right eye will be operated on as well. It’s not guaranteed to fix her eye alignment perfectly, in fact it’s not uncommon for kids with Craniofacial differences to need additional eye muscle surgery later on. 
  3. Lip revision - minor cosmetic repair to fix the lip pull that resulted from her first lip revision surgery 
  4. GI scope - her GI doctor wanted to add a quick camera scope while Joy was already under anesthesia to ensure there is no inflammation or other issues with her esophagus or top of her small intestine. There are no obvious signs that there are any issues, but her doctor wanted to rule these out as any contributing factors to her eating aversions. 

This surgery will be at the Plano campus instead of the main Dallas hospital that we are so familiar with, so this will be new terrain for us. This means no Ronald McDonald House either (since that’s about a 30-60 minute drive away depending on traffic). We’ll be getting a hotel room at a nearby hotel, but all of the procedures are Day-surgeries so hopefully we won’t have to stay more than a night or two. I’m advocating for an overnight stay at the hospital since she is getting so many procedures done, but I keep getting the run-around and no one seems to know who has the authority to authorize that decision. As it sits right now she’ll be sent home one she stabilizes after coming off of the anesthesia. 

Specific prayer requests: 
-wisdom on how whether or not to stay overnight at the hospital, and getting in touch with the people who can help make that call, and all other trip logistics  
-for Joy to be able to use her non-dominant hand to soothe (sucking thumb) post-op during the recovery stage. Her PT and OT have worked hard with her for the past few months on bi-lateral play/function so that she would be able to easily use her right arm/hand while the left was out of commission. She seems to be doing really well so I’m hopeful it will be a somewhat smooth transition. 
-for her eye muscle procedure to correct what it needs to correct the first time around so we can avoid additional eye surgeries. 
-No GI issues discovered 
-no sickness for her or anyone in the family leading up to the surgery!!! 

I know it’s been a while since I’ve shared updates about Joy’s progress. While we are certainly in a different season with her than we were in the first few months of her life, there is still so much we are working with her on through her 4 home-visit therapies she’s involved with. Things are still hard, but it’s a different kind of hard. Thank you all for the prayers as we enter back in to another season of surgery/recovery.❤️

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Comments

Dean HOELSCHER

Continuing to pray for y'all and specifically for your requests surrounding these surgeries. Love y'all!
  • about 2 months ago

Amy Rosplochowski

Sending prayers for her quick recovery and your decision making. Brynn had three eye muscle surgeries each time tightening and loosening different muscles. Although her eyes still don't work together all of the time and she doesn't have 3D vision we can't see them drift at all except if she is tired they bounce just a tiny bit. It definitely helped her be able to use both eyes and not allowing one to get too weak. She also healed really fast after those surgeries it was just rough the first 24 hours because she was nauseous and had itchy eyes. The next day she was back to her crazy self and we had to try to keep arm casts on so she wouldn't try to scratch her eyes. I did notice after the eye surgeries Brynn would always get more confident in her motor skills abilities. Feel free to message me if you need anything.
  • about 2 months ago

Christi Tredway

Love you guys. Thanks for sharing where y'all are and your prayer needs! Prayers🙏🏼
  • about 2 months ago

lora Donovan

Our continued prayers for successful surgeries and daily blessings for our beautiful sweet great granddaughter, her brother Isaac and her Mom & Dad. Love & blessings, Memaw & Pawpaw Donovan
  • about 2 months ago

Mireya Hernandez

We will be praying and please let us know if you need anything else! We love you! Everything is going go great, in Jesus name!
  • about 2 months ago

Cindy Brown

We are praying for our precious, sweet Joy Joy as she goes through these surgeries. Praying for wisdom and grace in all the logistics. Peace to your mama heart lovely Grace.
  • about 1 month ago