Support Registry Update

Update 10/7

In support of
Joy Brown and Family
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After 324 days, Joy is finally done with her helmet! We saw her craniofacial surgeon this morning who gave us the greenlight to discontinue her helmet as she has officially outgrown it and there is no need to continue it any longer from a head shape perspective. It’s crazy to see the before and after scans of her head and all of the progress that she made in her helmet! She already has a bump on her forehead from when she forgot she didn’t have the helmet on. She’ll learn quickly😂 
That’s been the most exciting thing that’s happened recently. We have had quite the whirlwind the past month and a half with her feeds (yes, still… ugh!). She no longer tolerates the formula she was on when we left the hospital in August (RE: previous update). There was a stretch of about a week where Joy would vomit almost every feed, as well as the medication we were giving her to help it. When nothing helped, we discontinued that formula and went back to the drawing board. We recently found a different one that she tolerates a lot better; We’ve been on this one for about a week now and she’s been doing great! Still no progress with solid foods, but we are still trying. She’ll get there one day! 

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Comments

lora Donovan

Congratulations Joy! We rejoice and celebrate with you that you are done with the helmet!
We continue to pray for your feeds and know that is going to be the next victory! Great job Joy and awesome job Mom! Much love, Memaw & Pawpaw. Philippians 4:6-7


  • about 2 months ago