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Love for Madison

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Love for Madison

Updates on Madison's trials, tribulations and triumphs! "LIKE" her page to receive updated info on her condition & posted events!

Madison was born was DiGeorge syndrome, a chromosome deletion. Under the DiGeorge umbrella comes as many as 80+ other diagnoses ranging from Congenital heart disease, to speech impairments and a million other things in between. Maddy averages about 3 surgeries per year and has endured some of the toughest including open heart surgery, palate repair and spine surgeries. Her story is a long one beca

use she is in a constant state of repair, recovery, or rehab, but don't let that fool you! Maddy is FULL OF LIFE, love and humor. She is smart, she is witty and she is a spitfire. Join her journey and get inspired!

03/22/2026

How it started 😴…how it went 🎣 🚤 ❤️
Maddy got away for the weekend to visit family and she got to go boating, and even more importantly, play with some baby chicks 🐤 , her favorite! I tell you, once 4 o’clock strikes she is awake and raring to go so we squeezed in as much as we could.

03/19/2026

We had the most amazing visit with Maddy’s new endocrine doctor at Emory yesterday. She was hand-picked by our pediatric endocrinologist, and we couldn’t be happier with who she chose. She spent almost an hour going over bone density, blood sugar/insulin dumping, graves/thyroid, hormones, and everything else Maddy has going on in the realm of endocrinology. She was kind, she was warm, and she knew Maddy‘s chart inside out, and upside down. I was very impressed! She made a few tweaks to help make our life easier and has a few things lined up in the near future to check off and make sure Maddy is kept safe. I have 100% confidence in our new doc and thankful beyond measure that we are in good hands. 🫶🏼

03/11/2026

We did it! This week Maddy officially graduated Children's Healthcare of Atlanta. 23 years of seeing just about every specialist under the sun, countless operations, numerous ICU stays, and more than 80 diagnosis all managed by the best team I could imagine. A few of her specialists will keep her on through adulthood, but we are officially moving on to adult care! 👩‍🎓 🎉 ❤️‍🩹

03/06/2026

Sleep study report came back that Maddy only spends about 13 minutes in REM each night. She spends 85% in stage two and is unable to get deeper sleep. The new meds we tried did absolutely nothing at all. You couldn't even tell she took them. That was the medication usually used to bring Benzo overdose patients back to the world. Did nothing for her. So... next up is a spit test to check her bio-individual circadian rhythm/sleep pattern. When we see when her body releases melatonin and cortisol, e will then know the proper time to dose her new medicine. Unfortunately this test means we have to stay awake all night and perform spit tests on the hour, each hour from 9pm-3am. Ugh. The new drug is actually GHB....yes, that GHB. Used in a certain formula and given in a specific dose, it is 85% likely to help her sleep. Given at the wrong time she will feel absolutely terrible, hence the spit test. He is very apprehensive and trying to make sure we have everything lined up for the best possible outcome. This will all take probably another 4-6 weeks to get done. Until then, she sleeps until 3:30 everyday and is over tired there after. Although she may still diagnose as "Narcolepsy type 2" for now it remains "idiopathic hypersomnolence."
Thanks for following along. Wish I had better news!

02/20/2026

Thank you, Cynthia for clicking the “shop now” button!!! 🙏♥️

02/17/2026

No report from the sleep and study yet but her doctor decided to try her on a new medication currently being used in a trial at Emory. It has to be delivered to us from a special pharmacy so as soon as it arrives we begin. Eddie and are both nervous as this is a very strong medication usually used to bring overdosing patients back to an awake status. I have to trust…we have to trust… and pray.
As per usual, insurance won’t cover any of it so it’s a one month trial and if there aren’t amazing results, we begin again at ground zero.

02/11/2026

Little miss finally getting her sleep and nap studies. Praying it shows why she is so incredibly fatigued. 🫩

01/23/2026

No good news to report on root cause of her fatigue or the management of it, but I do have good news! We had a visit with Maddy‘s G.I. doctor and his team was able to get her hooked up with a home healthcare company that is now providing her formula and supplies again! For more than a year, I have been scrounging for people’s leftover supply, surplus or even having to pay cash for all of her feeding tube needs. About 85% of her calories and nutrition come from her feeding tube so this was important beyond measure. This new company has the sweetest owner who is just “making it work“ between Medicare and Medicaid, who are still refusing to pay. We already received our first delivery and I felt like I had won the lottery! It’s such a relief to not have to source what she is 100% dependent on.
The picture below is from one day earlier this week when I drove her to Burger King because she wanted this box. She loves SpongeBob and saw this box was available there. We ordered the kids meal which she refused to eat any of, no surprise there lol, but she was happy to have gotten out of the house. I think that was pretty much the only time she left her house this week. She slept the whole way to Burger King and the whole ride home and came home and had to take a nap. I can’t begin to describe how tired this poor kid is. We only have about two or three more weeks before the sleep and nap study admission and neither one of us can wait. I pray they see whatever is “wrong” so we can make adjustments to her medication and get this kid feeling better again. I very much look forward to the post after that admission. 🥰

01/12/2026

Anyone with connections for getting Kate Farms Complete or 1.4 formula? I can buy on Amazon but didn’t know maybe someone had some overstock wanting to unload?

01/03/2026

Maddy has a great birthday with lots of love and presents and fun Vegas themed food. God willing 23 will be a year she gains back her happiness and energy. Thank you for all your notes of well wishes and LOVE!

01/01/2026

Tomorrow this chick turns 23! I don’t know how she’s survived it all and continues to, but she has the fight of a warrior. Still on the struggle bus with this relentless fatigue, she’s excited to celebrate another milestone with prayers that this new year for her brings restored energy. I mean she’s already beaten 100% of everything else. 🙌🏼
Her birthday theme this year is “Vegas.” Maddy would party like a rockstar every day given the opportunity to feel well. Should be a great day.
Let’s do this! 🎉 🎁 ♥️

12/24/2025

Thank you, Joyce!!! These will keep her so very warm!

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1364 Clifton Rd NE
Atlanta, GA
30322

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