Do It For Delanie

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!

02/08/2026

Several have been reaching out to check in on Delanie so I thought we would update with what we know.

Delanie has still had sporadic episodes of severe pain. She saw neurology on Thursday and also got x-rays of her spinal rods hardware and her pelvis due to her repeatedly telling us that the pain was in her legs. Thankfully her spinal rods hardware was fine, but she does have a partial dislocation (subluxation) of her left hip.

We spoke with her orthopedic in Atlanta on the phone Friday after he was able to review her x-rays from Chattanooga. Subluxation of hips is very common in non-weight bearing, wheelchair users. We have been monitoring her hips for years. Her multiple hospitalizations and need to spend more time flat lying the last couple of months could have caused the increased pain, but her orthopedic is not 100% that’s the only issue. We agreed to follow up with her pediatrician and have more in depth x-rays of her whole leg to rule out any additional fractures. Best case scenario that there is no other findings and she is able treat her hip pain with medication and increased physical activity to help with the dislocation. We really don’t want to have to put her through hip surgery unless it’s our last resort.

Continue to be thinking of her in the days to come. 💜 She cannot catch a break!

02/03/2026

Delanie’s been on homebound for school for a month. She’s finally back to her baseline repository wise! She’s been a busy girl with lots of appointments and a few more to go this week.

We are eager to get her back to school, but she Delanie has started having episodes of agonizing pain. These episodes started over a week ago, and we are still not sure what is causing them. She has expressed it is her legs, but beyond that we can’t decipher much more. Delanie is a very tough girl with a very high pain tolerance. For her to complain it takes a lot which makes it even more heartbreaking when we can’t figure out the cause. We are praying that we get some answers or relief soon for her. We know she’s ready to be pain free! Be thinking of her. 💜

01/06/2026

1/5/2026

Delanie was discharged home late this afternoon. To allow her to recover, we will be switching her to homebound for school. Her poor lungs have been so sick, and she needs time to clear out the pneumonia completely before we risk any more illnesses. She’s still needing respiratory treatments every four hours and will need time to wean off 24/7 bipap support and oxygen. She will also have to build up her stamina to get back up in her wheelchair after being bedridden for nearly a month.

Continue to pray for complete healing for Delanie and that our home can catch a break from the constant sickness.

01/04/2026

1/4/2026

Delanie was moved from PICU to the floor today. She’s still having a hard time clearing the congestion, cough, and pneumonia. We are trying some different things with her pulmonary care to see if we can help clear it. She still hasn’t been able to come off supplemental oxygen so we are continuing on IV antibiotics. We will meet with her pulmonologist tomorrow for next steps.

For the first time in days, our sweet girl is having moments of feeling like herself again! We have seen that toothless grin today; it has been so good for our souls! Ma & Pa brought Wesley by this afternoon too. We have missed him so much!

01/03/2026

1/3/2026

Delanie has finally been able to come down on her oxygen support today, but unfortunately she still has not felt much better. She is also having unexplained vomiting episodes. This admission has had so many curve balls.

They moved us to a new room today so we would have more space. We are hoping that in the next few days she perks up, and we can work towards goals for discharge. As always, we are on Delanie’s time.