Love for Madison

08/22/2026

Great day at Chattahoochee River National Recreation Area! Maddy LOVES butterflies so she had the best time feeding them. The heat was unbearable for someone like her so definitely will go back next Fall. 🦋

07/29/2026

Today was Maddy‘s first visit at adult level Emory Cardiology. Her new doctor used to be in pediatric cardiology and understood that although she’s 23… She’s not a 23-year-old. He was super friendly and warm and to say he was thorough was an understatement. He went back to literally the day she was born and talked about her cardiac care. He knew all of her doctors and all of her surgeons that she’s had and agreed with every step that they’ve ever made. reported that she has moved from a mild/moderate pulmonary valve leakage into the “severe” category. I was not prepared for that. There’s no intervention to be done right now, but it is definitely imminent. Today we walked away with a Holter monitor that she has to wear into the weekend to check for arrhythmias and to see if her meds need to be adjusted. Our next appointment is six months out if she doesn’t become symptomatic before then. At that time, she will have a cardiac MRI and round table discussion to see about details regarding when her next surgery will be and how they will perform it. We do have the opportunity to potentially have her pulmonary valve replacement done in the Cath Lab through her groin. If you’ve been with us since the beginning, you know Madison’s arteries and veins do not run like normal people, so I am not hopeful that will be an option for her. But if it is, this surgeon has been doing them since the inception of this procedure in the United States. That’s good news!
The thing I hate about this the most is the fact that Madison usually doesn’t decline overtime. We usually get the news that she is severe and then one day in the near future she wakes up and she’s just not the same kid anymore and it’s time. I guess in some ways that’s better than withering away, but it’s also scary. Please keep her and all of us in your prayers over the next few months as we navigate this upcoming fourth heart surgery. 😞 ❤️‍🩹

07/27/2026

Pampered Chef party:
Just a reminder if anyone needs anything fun and it’s inspiring for your kitchen. My favorite things: snackle box, pizza stone, rapid mandolin, and the 3pc opener set (LIFE CHANGING!)
Proceeds go to easy to use kitchen items for Madison!

07/20/2026

As Maddy's needs change, so does her Amazon Medical wishlist. https://www.amazon.com/hz/wishlist/ls/34ZRCEA21LTJS/ref=nav_wishlist_lists_1
Tonight is the last increase in her sleep meds. She has shown some improvement... things we notice, more smiles, willing to go somewhere every few days, reading and coloring again, trying to do the things she once loved. She even got in the pool and went under water a few minutes for the first time in YEARS!

07/17/2026

07/09/2026

Maddy had varicose vein surgery today and all went well! This was likely caused by all of her femoral lines that she had when she was a baby. One had developed a blood clot making the vein bulge and a painful and made me extremely nervous. I just wanted it gone. Hopefully by doing what we did today we prevented problems later down the road. As always, she was a trooper and is in no pain this evening. 🙌🏼

07/08/2026

Thank you so very much for the unicorn coloring book and the Pedialyte. Madison has a vein procedure tomorrow and plans on spending her recovery time coloring so this was perfect timing! Thank you for clicking the “shop now” button and for thinking of her always. ♥️♥️♥️

07/07/2026

THANK YOU to whomever clicked the medical wishlist "shop now" button and sent Maddy the syringes. Always so very helpful!! Thank you, again.

07/05/2026

Maddy had a really decent 4th yesterday! 🇺🇸 She is seemingly getting more restorative sleep which has her in a much more pleasant mood. She has left the house to go two places this week with no argument and yesterday she swam around in the pool for the first time in two years. We’ve been on the new meds for over a week and have increased the dose once already. We have two more increases to go before she is where she needs to be. So far no side effects, which is also great. I’m very hopeful we will have our girl back to her self VERY soon! ♥️

06/26/2026

Sweet Jesus, hallelujah! After more than two years of waiting, Madison‘s medicine for idiopathic hypersomnia has finally arrived in our home! This has been the most trouble out of everything I’ve ever dealt with in 23 years with her. After all we’ve been through just trying to get the medication, please pray it works!