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Do It For Delanie, Dunlap, TN (2025)

08/16/2025

Day 16 of SMA Awareness Month

Routines
Almost 3/4 of Delanie’s day is pre-planned routines. Between treatments, feedings, therapies, and typical kid activities, there is little down time. With both of us working and Delanie going to school, routines are even more crucial to get all of Delanie’s daily care in.

So what does Delanie need to do during the day? (Beyond the basics)
-nebulizers
-stretches
-medications
-cough assist
-CPT
-tube feeds
-cleaning g/j tube site
-feeding therapy
-independent sitting
-wheelchair practice
-speech/occupational/physical therapy
-suctioning
-Bipap
-cleaning of equipment and supplies
-school

We run on schedules and routines. We don’t live a life of spontaneity. Without nursing, we would never be able to work, complete basic housework, or even make meals or run to the store. We make it happen one day, one hour, one minute, even one second at a time. 💜

08/15/2025

Day 15 of SMA Awareness Month

Adapting & Fighting the Unexpected
For as long as I can remember, I’ve been telling people that we live minute by minute. All joking aside, it is pretty accurate. We plan and schedule multiple appointments a month. That’s doesn’t include if she gets sick or need an ER visit or pulls out her feeding tube or… well you get the point.

Delanie is getting stronger, but she can still go from perfectly fine to needing immediate medical attention in a matter of seconds. Do we plan for these things? No, but we are constantly on our toes. Every time these things happen they are stressful, emotional, and exhausting. We have serious PTSD from seeing her turn blue and be intubated. So for every cough I immediately think worse case scenario… combine that school germs and it’s a constant state of worry.

I think adapting to not being in control has been one of the hardest parts of Delanie’s diagnosis. We have no idea what each day will hold. We don’t live with consistency or security. It’s a huge stressor in our daily lives.

On top of that, we spend countless hours arguing and fighting for the care she needs. If the people denying her care could walk a day in our shoes, they would see why we fight so hard for her. Maybe if they saw her playing one minute and gasping for air the next. Maybe if they didn’t sleep for weeks trying to find a way to convince insurance to give her the medical equipment she needs. Maybe they would show more grace, more kindness, and more understanding.

The unknown is scary, but it’s also hopeful. We are growing to be the support she needs. The hurdles get bigger, but we haven’t stopped fighting. We want her to know we’d do anything to adapt and overcome.

08/14/2025

Day 14 of SMA Awareness

Nursing
Delanie’s complex care qualifies her for private, in-home nursing. Her nurses are what make it possible for Willie and I to go to work and Delanie to be able to attend school. Without her nurses, we would not be able to give her the life that she deserves. It was a big adjustment to have “strangers” in our home 12 hours a day, but we have been blessed with nurses that didn’t feel like strangers for very long.

Delanie has three nurses that split 7 days a week, 12 hour shifts. They love our girl deeply, and Delanie loves them too! They go to appointments, outings, school, events, and everything in between. They spend time with our families and easily feel like extensions of our family. They have cared for her on the good days and the bad days. Willie and I will never be able to thank them for all they do for us and especially Delanie!

Asking for help is hard, but if you’re lucky to get nurses like ours, it’s life changing!

08/13/2025

Day 13 of SMA Awareness Month

Accessibility
Since Delanie became a wheelchair user, everywhere we go we notice small details that people with disabilities have to overcome every day. For me going out at times can almost get overwhelming… I’m a fixer by nature, but there are some things that I can’t fix because I have no control. So these things race my mind as I lay in bed at night…. “Delanie’s wheelchair and equipment won’t even fit through some doors to get into a public bathroom. She will need assistance going to the bathroom and she has outgrown the baby changing station. That tiny curb to get into the store is nearly impossible in a wheelchair. She can’t travel in the mulch to get to the playground in her wheelchair. There is no playground equipment that she can access from her chair….”

The list grows day by day. It makes going out in public scary and frustrating. We can’t take her places we have never been without researching beforehand. There are places she will never be able to go because they don’t have handicap accommodations. How many times have you been to a restaurant and have to be turned away for not having a ramp to just get in the building or not be able to use the restroom because the stall is too small? For most the answer is never, but for those that are disabled it’s a slap in the face. Oftentimes we refer to accessibility as a “special need”, but there is nothing special about human rights. There are thousands of disabled people that are being excluded from daily activities at no fault of their own. We have to fight for better, vote for better, and be a voice for those needing accessibility because they DESERVE THAT RIGHT.

08/12/2025

Day 12 of SMA Awareness

Illnesses/Hospitalizations
A common cold can knock Delanie down for weeks. She has an unproductive cough that exhausts her when she has to do it excessively. Additionally, she is a choking hazard on congestion and even just extra saliva. When Delanie is sick, her daily routine is nearly tripled. She receives cough assist every 2-4 hours (even at night). She needs constant CPT and no visitors. She is quarantined because her weak respiratory system cannot handle having multiple illnesses. She needs to wear her bipap 24/7 to allow her body to rest and to help with her work of breathing. Her oxygen saturation is monitored to make sure that we don’t need a trip to the ER. We provide supplemental oxygen as needed. We up her nebulizer treatments to every 4 hours as well. It is terrifying, stressful, and exhausting (mentally and physically) for us. However, this routine is our best hope to avoid a hospital stay.

In December of 2019, Delanie was having a hard time breathing. Her breaths were labored and she was sleeping all day long. At this time, Delanie had no medical equipment at home so we had no way to tell if her oxygen was too low or to be able to give her any treatments. We questioned whether we should take her to the ER, but she wasn’t running a fever and seemed to be feeling a little better that morning. She went downhill quickly. By the time we got her loaded in the car she was struggling for air. We drove well over the speed limit to get her to the children’s hospital. We got to the ER and Delanie was turning blue from not getting enough oxygen. They could not get her oxygen up with high flow oxygen and within minutes we watched Delanie be intubated, after several attempts. Both of Delanie’s lungs had collapsed from her inability to cough and pneumonia. She was in acute respiratory failure and later diagnosed with rhino enterovirus. We spent 38 days in PICU over that virus. She even spent her first Christmas there.

A very common virus almost cost us everything. Delanie has had several ER visits and hospitalizations since her PICU stay, but as time goes on we are getting better at catching the warning signs and intervening before she needs to be intubated. We still live in fear of ever seeing her in that condition again. We miss out on a lot of events and gatherings due to protecting her health. Her health is worth every missed event, every inconvenience, and every precaution!

08/11/2025

Day 11 of SMA Awareness

Daily Medication
Delanie takes a couple different medicines throughout the day. She takes an albuterol and sodium chloride nebulizer treatment through her bipap 2x a day to clear out her lungs. She takes esomeprazole through her J tube twice a day for her GERD (gastroesophageal reflux disease). To help combat respiratory issues, Delanie takes zyrtec and Flonase daily as well. To fight reoccurring pneumonia, Delanie is on a low dose antibiotic that she takes 3 days a week. Lastly, Delanie takes Evrysdi once a day as an SMA treatment. Her feeding tube is an easy way to administer them, making her medications one of the easiest parts of our daily routine!

08/10/2025

Day 10 of SMA Awareness Month

Equipment
There is a wide variety of equipment used by those in the SMA community. Delanie uses several pieces of equipment daily and some equipment we have at our home in case of emergency.

Bipap
Delanie wears a bipap machine at night while she sleeps. This machine helps her breathe so that she can rest. Breathing is a lot of work for Delanie since she her muscles are so weak so the help at night allows her to have more energy during the day.

Cough Assist
Delanie is not strong enough to produce a productive cough. So whenever she gets secretions stuck she can’t move them and her oxygen drops because she begins to struggle to breathe. The cough assist blows air in and out of her lungs like a manual cough to help her move the secretions.

Feeding Pump
Delanie is at risk for aspiration. The muscles needed to swallow are too weak to keep food and drink from going into her lungs when she swallows. Delanie has a G/J feeding tube to receive all her nutrients.

Suction
Delanie is suctioned throughout the day. She struggles to manage her saliva, especially since she does not eat by mouth. Suctioning helps us to be able to protect her airway and lungs.

Pulse Ox
We use Delanie’s heartrate and oxygen saturations for a lot of indicators. They tell us if she is getting sick, in pain, or needs cough assist treatments. She also wears her pulse ox when she is asleep so we know if she is struggling to breathe or needs to be suctioned.

Nebulizer
To keep her healthy and lungs clear, Delanie receives nebulizer treatment through her BiPap to keep her lungs healthy twice a day.

Emergencies
Delanie has an oxygen concentrator and rescue oxygen for when she is sick or struggling to breathe. We also received CPR and ambu bag training before we left PICU.

Stander
Delanie’s stander helps her bones develop as she starts to work on weight bearing. It also helps with her circulation and GI tract.

Wheelchair
My favorite piece of equipment because she loves the independence! She is amazing in her wheelchair and is getting faster every day!

Braces
Delanie wears ankle orthotics (AFOs) 22hours a day. The ankle orthotics help release the tendons and muscles in her feet since she is not weight bearing.

We are way more medically trained than we ever wanted to be! Her equipment is overwhelming, but it keeps her healthy, safe and alive. We will tote her equipment everywhere.

08/09/2025

Day 9 of SMA Awareness Month

Therapy
Delanie sees a physical therapist, feeding/speech therapist, and an occupational therapist. SMA affects the whole body and how different parts of her body work together. When we first started therapies, her movements were slow, lethargic, or non-existent. Her rigorous therapies are helping her gain mobility and movement that was lost, or non-existent, prior to her receiving treatment. Sometimes, therapy keeps her simply from regressing instead of progressing. Nonetheless, therapy is vital to Delanie’s daily care.

Physical Therapy
Delanie sees a physical therapist weekly. Her PT makes sure that we are not developing more problems from the lack of movement in her body. We do physical therapy at home every single day. During the school year, Delanie also receives physical therapy at school. The list is never ending, and we are always adding new things to help her gain strength and confidence.

Occupational Therapy
Delanie sees an occupational therapist once a week as well. We work on making and adapting things to allow her to do every day tasks as independently as possible. Delanie also works on fine motor skills! She also receives OT once a week at school.

Feeding Therapy
Delanie has not eaten by mouth since September of 2019 due her being an aspiration risk. Also, since being intubated, she has oral aversions to people touching her mouth or trying to feed her. It has been very slow progress, and she really struggles with finding things she is willing to try. She takes small taste of purees and is slowly growing more willing to try different flavors and textures. She loves things that are cold, and that is also a feeding therapy technique to make her swallow what she puts in the mouth. Delanie loves to lick on popsicles or have cold applesauce pouches to play in and taste. Since progress is very slow, we are very thankful for her feeding tube that helps her grow!

Speech Therapy
Delanie was diagnosed with a speech delay shortly after her 2nd birthday. She speaks about 20 words or phrases that we can make out. She is very smart and creative! Her low muscle tone, extensive intubation, and lack of oral eating plays a role in her struggle to speak. It’s very hard to watch her get frustrated and not be able to tell us what’s going on. She started using her AAC device (communication device) almost 1 year ago and she’s come so far with it! It’s going to be such a wonderful tool for her needs and wants. She receives speech services at school too. We have hopes that one day she will be able to be completely verbal.

Delanie puts in the hardwork and it does not go unnoticed. She continues to make progress in all areas of her life.

08/08/2025

Day 8 of SMA Awareness Month

Newborn Screening
Five years ago, there was a federal recommendation that SMA be added to all states’ newborn screenings. Today, ALL 50 STATES screen newborns for SMA.

When Delanie was born May 18, 2019, Tennessee was not implementing newborn screenings for SMA. As a result and our lack of knowledge about SMA and warning signs, her body started regressing. Every day she was losing neurons that she will never get back. Newborn screenings are allowing children to get treatment before they start showing symptoms, thus limiting the effects of SMA on their bodies. It is hard not to wonder where we would be today had we been able to diagnose her earlier. Nonetheless, we are grateful that now all babies born in Tennessee are being tested for SMA as part of our state’s newborn screening.

Delanie’s brother was screened by the newborn screening. The newborn screening confirmed no SMA by 10 days old. It was emotional seeing how soon newborns could be identified! We have seen other individuals in the SMA community thrive from getting their diagnosis before being symptomatic. It’s a huge win for the SMA community!

08/07/2025

Six years ago today, Delanie was diagnosed with SMA, Type 1. In a tiny room, our hearts and world were shattered. I had never felt so helpless in my whole life. It is a feeling that I wouldn’t wish for my worst enemy.

Delanie has lived through more medical treatments, appointments, diagnostic tests, hospitalizations, and therapies in the last 6 years than most go through in a lifetime. She has taken every step of her diagnosis and the things that come with it with dignity and grace. She knows no other life than one filled with medical interventions.

We have feared losing her every single day since August 7, 2019. She has had to fight harder and more often than any child should. Each year has come with more challenges and new issues to overcome. Yet, she still prevails. In the last 6 years, she has changed me. I’m a better wife, teacher, mother, and human being because of her. She’s a true gift and so is every day we are blessed with her!

We will never be the same—forever changed.
We will never stop advocating.
We will never stop fighting.
We will never stop searching for a cure.
Our daughter’s life is dependent on that.

For day 7 of SMA Awareness Month, I choose to celebrate how far we have come since her diagnosis day. A fragile girl that wasn’t suppose to live pass her second birthday started 1st grade this week. She’s so intelligent (and stubborn). She has every reason to give up, but instead she persists each day with a smile on her face. She is beating odds and proving that she is more than just a statistic. She has survived more in her short life than most suffer in a lifetime. She has a community of support to remind us that we are stronger together. SMA may have changed our lives, but we are not done fighting. 💜

08/06/2025

Day 6 of SMA Awareness

Doctors and Specialists
Delanie is followed by several doctors and specialists on a regular basis. SMA affects different parts of her body in different ways. We see each doctor/specialists every 3-6 months. We are so frequent at some offices that they know us by name before we even go to sign in.

Pediatrician
Delanie's pediatrician was the first person that led us to getting answers. He acted quickly and got us directly admitted to start the process of her testing.

Neurologist
Delanie's neurologist and staff led the way in making her the first child in East Tennessee and at Children's at Erlanger to receive Zolgensma. He is her leading specialist for her SMA and plays a big role in treatments.

Pulmonologist
Her pulmonologist keeps her lungs healthy and safe. He monitors her bipap and adjusts her cough assists settings as she grows.

Orthopedic
Since being diagnosed with scoliosis, we see an orthopedic in Atlanta to keep up with her spinal rods. She also sees him for her ankles since her Achilles lengthening.We also see a local orthopedic as needed.

Orthotist
We see two different orthotists. One of her othotists is local and helps makes her AFOs (ankle braces). The other orthotist is in Atlanta that follows her scoliosis.

Gastroenterologist
Her GI keeps up with her feeding tube. Delanie has had an NG tube, PEG G/J tube, and a G/J Mic-key button. We work with GI to find the best way for her to consistently gain weight without putting her at risk for aspiration.

Dietitian
Delanie's dietitian and GI work very closely together. Her dietitian makes formula changes and closely monitors her weight.

Cardiologist
Delanie was on high dose of steroids following gene therapy. She also had some alarming cardiac blood work. We were followed by a cardiologist to make sure that her heart was healthy and was able to handle the extended steroid use. After several good visits, she was cleared from routine visits.

Ophthalmologist
Delanie had unexplained shaking in her eyes that comes and goes. She was diagnosed with nystagmus. We are not sure if this SMA related, but this seems to pretty common in the SMA community. Over time it corrected and she was released to yearly visits.

Genetic Specialist
Her genetic specialist was the one to officially diagnose Delanie with SMA, Type 1. She also completed the test that determined Willie and I were both carriers for SMA.

ENT
Delanie failed 3 hearing tests. She holds fluid in her ear, more than likely due to the fact that she doesn’t sit up as much as a child her age and her severe reflux. Since she can’t keep the fluid out of her ears, she’s had ear tubes placed. She’s now on consult since passing her hearing test.

Endocrinologist
Delanie takes medication that we don’t know the long term effects. We get blood work complete every 6 months to keep her in check.

08/05/2025

Day 5 of SMA Awareness month

Warning Signs
Being first time parents, Willie and I often feel like we didn’t know what warning signs we should have been looking for in Delanie. After her diagnosis, I went and looked up the warning signs for SMA and realized that she had started showing some symptoms as early as ten days old. Here are a list of common warning signs for SMA:

Poor head control- Delanie lost all head control before treatment. She could barely wiggle it a sign side fo side. Today, she has full head control!!

Weak cough- Delanie’s cough is so weak she can not move her own secretions. She has a cough assist machine that allows us to help her cough. Today, we still use a cough assist but it’s improving!!

Weak cry- By a month old, Delanie’s cry was so soft you couldn’t hear her from another room. Today, her cry is loud enough to be heard throughout our whole house.

Progressive weakness of muscles used to chew and swallow- Delanie had trouble gaining weight and taking a bottle as early as ten days old. She failed a swallow study in September that resulted in an NG feeding tube. It was later surgically changed to a GJ feeding tube due to high risk of aspiration and failure to thrive. Today, she is in feeding therapy to help her build confidence is eating and trying things by mouth. We continue to work on her swallow!

Poor muscle tone- At her one month check up, her arms had excess skin from lack of muscle growth from birth. Now her muscles are no longer atrophied. She works continually to keep her muscles in action!

“Frog-leg” posture when lying- After diagnosis her legs were splayed out from her having no muscle control of her legs or hips. Since treatment she can straighten and control her legs and hips as she pleases.

Severe muscle weakness on both sides- When we were in the hospital to find out why she was regressing, we initially thought she might have suffered a stroke but both sides were affected and not just one. After her MRI confirmed no stroke, we continued on with genetic testing.

Progressive weakness of muscles that help in breathing (intercostal muscles)- Breathing was exhausting for Delanie. Her low muscle tone made her work really hard to inhale and exhale--resulting in fast, short breaths. She was constantly sweaty from how much effort she was having to put into breathing. With her bipap giving her a break at night, her breathing is so much better!

Limited mobility- By the time of diagnosis, Delanie had lost all movement in her body. Since treatment, she is able to move her whole body, roll, and sit independently. She’s now working to stand with support. Not to mention she has some pretty sweet skills in her wheelchair!

Delayed gross motor skills- Since treatment, Delanie has made a lot of progress, but still has not hit all milestones for her age.

Spontaneous tongue movements- Her pulmonologist described her tongue by saying it looked like a “bag of worms”. That’s still the best description I can think of to explain it. Her tongue never stops moving/shaking inside her mouth.

Scoliosis (curvature of the spine)- Delanie’s scoliosis curve was 115 degrees before she had 2 surgeries to place MAGEC growth rods in the back. Her lung function has improved drastically and she can now sit up straight. Delanie will continue to need scoliosis treatment as she grows.

Some SMA individuals only have some of these symptoms, but Delanie has experienced all of these. In the hardest of days, we still held onto hope for progress. We have been so blessed with how far she has come!

Do It For Delanie

08/16/2025

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