Update on Susannah - Cushings Syndrome

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

Easter pics from friends

Check out some Easter pics we received from our friends!!!!

Julie sent us a picture of Mason and Cameron with her on Easter. Their Aunt from Virginia came out to visit them.

Here is Miss Sophia on Easter with her new bunny.

Sophia's school is having a fundraiser for her - you can read about it on her site and help with making a donation.

The date's are May 6th and 7th and the children at Busy Bee will be jumping for approximately 15 minutes. There is a flat sponsor donation of $5.00 to make it easier for the children. During the 2 day event Maureen will be at the daycare with Sophia. You can get the letter and sponsor sheet that has been handed out from the school by contacting Maureen (Sophia's mom).

Check Out Our Friends

Junior's Amazing Journey
Loving, Laughing, Learning, and Living Life to the Fullest

Leigh Ann - Age 7 1/2 - ROHHAD ANGEL

Tuesday - NEUROBLASTOMA ANGEL

Tuesday's Mom's Blog

Joanna - Spina Bifida


Mason Byrom - 4 Years Old - ROHHAD


Sophia Adamo - 4 Years Old - ROHHAD

Josh Wooten - 12 Years Old - ROHHAD

Susannah - 5 1/2 Years Old - Cushing's Syndrome - PPNAD

Susannah - Cushing's Syndrome - Haven's Newest Friend

PLEASE give lots of prayers, thoughts, good wishes (however you want to do it) to Susannah Wednesday morning. She is in Bethesda undergoing a bilateral adrenalectomy for PPNAD - a rare form of adrenal Cushing's Syndrome.

Susannah is 5 1/2 years old.

Isn't she just adorable!!! This is Susannah - you can visit her web site at: http://www.carepages.com/carepages/susannahzahn2007. You will have to become a member to see her but that really is just an easy step and took me 30 seconds.

There is an amazing story as to how I connected with Susannah and her mom, Jessie. Somehow in my research and scouring of the Internet I found a webforum called webdiagnosis. The post was from over 2 years ago and it was the plea of a desperate mother asking for help with her daughter. She had all these crazy symptoms and no one knew what could be going on with her daughter. After reading everything she sounded very similar to Haven and the many other wonderful chidren I know.

So I posted a brief story about Haven and gave her my email address. Never in a million years did I expect to hear from the mom or even think that email was good anymore. BUT I DID.

Tonight - I received an email from Jess telling me a brief story of her daughter Susannah.

I can't wait to learn more about Susannah.

Love to Mason!!!

This morning I received an email from our friend Julie - MASON'S MOM - He was sick all night and they weren't able to sleep at all. Mason's dad stayed home with him today as he was ordered from the doctors to stay home on the vent for the next few days. I was so sad to hear that Mason's oxygen was very low and he was sick. Around 5am when he started to get ready for school is O2 fell in to the 70's and slowly climbed in to the 80's. Please visit him at his site and let him know you are thinking of him. I worry about all of our kids all the time and to hear that one of them is sick really bothers me.

On top of that - I went to lunch with Emily for my birthday and came back to my desk and there was a beautiful package. After looking around for a few seconds I found the card. Mason sent me the most beautiful package of candy, fruit, and cheese/crackers!!!! I was told the boxes were for Haven. Seems like Haven has enjoyed my birthday as much as I have!

We love you Mason! :) Thank you so much for the gift.