Hi Everyone....I'm so excited to get an email from Jess - Susannah's mom - today. I have been keeping updated on Susannah's recovery through her web site. It's been about 2 weeks since her surgery and thought I'd share her mom's happy post from their site to all of you!
Dear Family and Friends,
We are home and and getting caught up on our rest. Susannah is doing fantastic. She went to church and Sunday School over the weekend and is getting back into the groove of the normal routine. She still seems to get tired pretty quick, but I have to keep reminding myself, it was less than two weeks ago that she had MAJOR surgery.
The final visit from Dr. Stratakis last Friday was everything we hoped for. He brought a copy of the pathology report on the removed adrenal glands. After dissection and staining they showed the rare nodules on both the cortex and medulla (outside and inside) of the glands. This was exactly what we hoped to see. It also showed they weren't the kind that could lead to a more serious disease called Carney's Complex, so this was also excellent news.
Dr. Stratakis says he now expects to see her height shoot up and her weight go down over the next year. He wants to see her back in September for just a couple days of blood work. He also wants me to keep in contact with him about her fevers....he's "fascinated" that they've stopped now that the cortisol is fully weaned back. He will also see her again in a year for another follow-up. We've been educated on what to do in times of sickness or injury to supplement her cortisol, and reminded, numerous times, that adrenal insufficency is a very very dangerous thing. However, if you medicate correctly, you can live a completely normal life.
We are so excited for that to start for Susannah. We will keep you up to date with her exciting health and physical milestones as she recovers.
Love to all - Jess
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