Do It For Delanie

05/18/2026

Happy 7th Birthday, Delanie! 🎉

05/10/2026

Happy Mother’s Day to the moms that got more than they asked for.

Motherhood came with a diagnosis that changed every part of what you thought being a mom would look like.

It came with hospital stays, medical equipment, endless specialists, therapies, and appointments.

It came with PTSD, anxiety, and uncharted territory.

It came with insurance denials, inclusion advocacy, and fighting for accessibility.

Your title of mom also changed to nurse, therapist, insurance specialist, and so much more.

On most days you feel like you get to be everything but “mom”, but you have handled this role with grace and humility. You have fought more battles than most, but still get up every day to take on the next challenge.

You have fought to make this world a more accepting place.

You have been changed by the journey you found yourself on.

You have shown the true meaning of unconditional love.

On Mother’s Day and everyday, may you always feel loved and supported.

05/06/2026

National Nurses Day 💜

We have encounter hundreds of nurses between Delanie’s multiple specialists, ER visits, hospital admission, surgeries, and home. They have cared for Delanie at her worst and celebrated her at her best. Nurses have been and always will be a crucial part of Delanie’s journey!

Delanie has been receiving private duty nursing for nearly 6.5 years. It’s necessity for her and a life saver for us. Delanie’s extensive needs requires her to have nursing to attend school which allows us both to work to support the financial needs of raising a child with disabilities. We have had several nurses since we started and all of them hold a special place in our hearts. Nursing is hard, and finding someone to do pediatric private duty is even harder. Not only are they nurses, but to Delanie they are her friends, supporters, and an extension of our family.

We currently have 4 nurses staffed to cover a variety of 12 hour shifts. Without them, our home would not function! They each bring exceptional care and love Delanie deeply. We are blessed that they took a job that gives her the life she deserves 💜

Thank you Tolly, Shanda, Richelle, and Caitlin for all you do for Delanie and our family. We appreciate you more than you will ever know!

04/12/2026

Spending her afternoon enjoying TN baseball as we work on getting her new stander adjusted. 🧡

We are so blessed with a supportive village! Her OT has been searching posts for sit-to-stand standers non-stop and got us in touch with a wonderful family in Alabama. Our community stepped in and helped us fund this stander in under an hour, and we were able to make the drive to purchase it the same day. An answered prayer for Delanie’s growing needs!

We are so appreciative of those that continue to step in and fill the gaps that often feel so out of reach. This journey has humbled us in so many ways. Thank you will never be enough!

04/04/2026

What was supposed to be a quick, easy ortho visit turned into a hot mess of a day. 🙃

We were scheduled at the Kennesaw location for Delanie’s spinal rods lengthening with her orthopedic. She was also due to be fitted for new AFOs with her orthotist right after seeing her orthopedic. Once we arrived, they realized that they had scheduled her at the Meridian location for the orthotist and not Kennesaw. They thankfully got it sorted out for us to switch it to the Kennesaw location. We go back to get her rods lengthened and they realize the device they use was never delivered to Kennesaw and was at the Atlanta location. We completed X-rays and then went downstairs to the orthotist for her to be fitted for AFOs. We then drove another 45 minutes to the Atlanta location and finally got her spinal rods lengthened with the nurse practitioner. Regardless, we are very thankful they were able to make sure she got what needed today. (They were all very apologetic!)

Not the easiest of days and not the best of news for our big girl. She’s got several orthopedic concerns that could potentially lead to a variety or procedures/surgeries with her hips, knees, and ankles. We are hoping to do the best we can to put these surgeries off or even prevent them. The bigger she gets, the toll of SMA on her growing body comes with a lot of uncharted territory. A lot of these issues come from her lack of weight bearing through her legs. Her current stander is not providing her the support she needs at this time. We are in search of a sit-to-stand pediatric stander. Please reach out if you know of one available!

Also if you made it this far, we are still in search of private duty nurses. 🙃

We are beat down after today, but praying that better days are coming! When it rains, it pours!

03/29/2026

We are still in need of‼️PRIVATE DUTY NURSES‼️

Full time opening:
▪️LPN or RN position in Dunlap, TN
▪️12 hour shifts 5:30 AM to 5:30 PM (Central); Week days
▪️Home and school care required

Part-time opening:
▪️LPN or RN position in Dunlap, TN
▪️Flexible shift times; weekends

Please reach out if you have any questions!!

You can apply through Maxim by texting or calling 423-301-9330

03/27/2026

After being on homebound since December, Delanie made it back to school today! She had a great day and was so excited to see her friends and teachers 🎉💕

03/17/2026

We are still searching for nurses!

We are in need of‼️PRIVATE DUTY NURSES‼️
Two of Delanie’s nurses will be taking new jobs leaving week days and weekends available:

Full time opening:
▪️LPN or RN position in Dunlap, TN
▪️12 hour shifts 5:30 AM to 5:30 PM (Central); Week days
▪️Home and school care required

Part-time opening:
▪️LPN or RN position in Dunlap, TN
▪️Flexible shift times; weekends

Please reach out if you have any questions!!

You can apply through Maxim by texting or calling 423-301-9330

03/12/2026

We are in need of‼️PRIVATE DUTY NURSES‼️
Two of Delanie’s nurses will be taking new jobs leaving week days and weekends available:

Full time opening:
▪️LPN or RN position in Dunlap, TN
▪️12 hour shifts 5:30 AM to 5:30 PM (Central); Week days
▪️Home and school care required

Part-time opening:
▪️LPN or RN position in Dunlap, TN
▪️Flexible shift times; weekends

Please reach out if you have any questions!!

You can apply through Maxim by texting or calling 423-301-9330

02/28/2026

Happy Rare Disease Day!

Did you know...
• 300 million people are living with a rare disease worldwide
• 72% of rare diseases are genetic
• 70% of those genetic rare diseases start in childhood
• There is no cure for the majority of Rare Diseases and many go undiagnosed
• Rare Disease Day improves knowledge among the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases!

Delanie fights a rare disease every day that has no cure. 1 in every 6,000-10,000 are diagnosed with Spinal Muscular Atrophy. However, being a carrier for SMA is not rare! 1 in every 40 people carry the SMA gene.

We love someone RARE! 💜

02/13/2026

Today, we followed up with Delanie’s pediatrician about her leg pain. She got her bloodwork done like a champ and several more extensive x-rays. Unfortunately, still no answer on what’s causing her intense pain. 🙁 There was some concerning finds in these x-rays with her bone density and some bowing of her legs that we will follow up with endocrinology and orthopedic. So more appointments to come, but still no relief. Although we are very thankful for no fractures, we are running out of ideas on what is wrong and how to fix it. Our next attempt will to be to rule out nerve pain with neurology.

She’s truly the happiest girl, even when she has a million reasons not to be. There is so much hope in that!