Levi's Milestones & Miracles

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Levi's Milestones & Miracles Levi was born at 24 weeks: a micro-preemie. Since then, he has battled extensive hospital stays and brain surgeries.

We hope this page will bless and help others join in his progress, challenges, and, most importantly, the love we hold for our Levi.

As some may know, this past week was busy for Levi. It had moments of chaos, worry, and new updates to his health plan. ...
29/08/2026

As some may know, this past week was busy for Levi. It had moments of chaos, worry, and new updates to his health plan. Levi began experiencing laughing spells on Saturday (post-surgery on Friday) and crying spells when he would fall asleep within 5-10 minutes. We lost power on Saturday evening from the storm in Memphis and stayed with Grammie and Poppi from Sunday through Tuesday. Levi's sleep spells continued, which made us call his neurosurgeon, who advised us to monitor closely and take him in if anything progressed. It didn't, until Tuesday. We went to work, and around 8:00am, Grammie and Poppi notified us that Levi was unresponsive and was vomiting. Poppi took him to Le Bonheur Children's Hospital ED. Koedy left school immediately and quickly picked up Danielle from her school. When we arrived at the ED, Levi's O2 was low (78-80), and the emergency team began stabilizing and running tests. His blood results were fine, his CT wasn't abnormal, and his shunts were intact. But, soon after, Levi began having active seizures. Rescue meds were administered, and he was held in the hospital from Tuesday to Thursday. His team ran an overnight EEG, MRI, and an additional X-ray. This was all likely due to the shifting of brain fluid from the shunt placed on August 21st. Levi is now on a daily seizure prevention medication, which causes him to be drowsy, somewhat irritable, and restless. Levi was discharged from Le Bonheur on Thursday. He also had his leg brace and adaptive vests fitting on Friday!

On the plus side, we got to see the Memphis bridge light up in memoriam for the Queen of Tennessee, Dolly Parton.

We pray he responds well to his new medications and that they balance out within a few days. We pray for this continued positive development, specifically with head and trunk control. And we pray for his continued productive healing.

If you would like to keep up with Levi on TikTok: https://www.tiktok.com/t/ZTULG4ySL/

We woke at 4 to get to the hospital by 5. Levi’s been back since about 8am. They put him under to do his CT and insert t...
21/08/2026

We woke at 4 to get to the hospital by 5. Levi’s been back since about 8am. They put him under to do his CT and insert the IV. Then he finally started surgery probably around 9am. Koedy and I tried to get a little sleep on the lobby sofas for about 30mins.

We don’t know which route his NSG (neuro surgeon) will choose yet. They will decide in the OR. We also don’t know how long it will be. We don’t know how many days we will have to stay overnight- usually between 1-3. We pray they can do the least invasive method that requires the least extra foreign objects in his head. Of course, we’re also very anxious about the possibility of another life-threatening infection from surgery and having more items in his body.

These past few weeks have been a joyous, praiseworthy, and turbulent ride for Levi and us. First, he started school on A...
16/08/2026

These past few weeks have been a joyous, praiseworthy, and turbulent ride for Levi and us. First, he started school on August 10th, where he had the best day and was so talkative for the rest of the evening after we picked him up from school. We also received news that Levi was accepted into the NAPA Center (the Neurological and Physical Abilitation Center) program (link below). This program consists of intensive physical, occupational, and DMI therapies, with around 2-3 weeks of daily targeted programming. While this is wonderful news, we had to decide between three locations: Austin, Chicago, and Los Angeles, ultimately deciding on Austin. We will likely ask Levi to participate again in the program next year in Los Angeles. For now, we are eager and anxious for the outcomes we pray are waiting, and cautious and protective about what will be required of Levi. We will also be raising funds through out GoFundMe for travel, lodging and payment for this 3 week program which is not covered by insurance and will cost $9,000-$12,000.

While these are praises to our God, we also are in a state of lament and requesting prayer.
Levi's last MRI did not look good. His left ventricle is not 'communicating' with the right. Thus, this requires another brain surgery to either place a connecting catheter from left to right or an entirely new shunt on the left side. Neither is a great option, but we pray and prefer the former, as it requires less hardware and is not as invasive. He is scheduled for surgery on Friday.

We ask: Please pray for his neurosurgeon, his nurses, lab techs, custodial workers who prepare the surgical area, and anesthesiologist. And pray for Levi, for his healing, definitive pre/post care, his continued neurological development, and that he recovers swiftly and without complications.

Link: https://napacenter.org/about-us-2/

GoFundMe: https://www.gofundme.com/f/support-for-the-harper-family-baby-levi

Levi’s first piece of adaptive equipment has arrived! Our life with our son looks a lot different than we ever would’ve ...
08/08/2026

Levi’s first piece of adaptive equipment has arrived! Our life with our son looks a lot different than we ever would’ve imagined. We are having to navigate new medical challenges and new medical requirements to help him get through the day. Because he still cannot hold his head up on his own or sit up, he spends most of his days in reclined position or laying down which is awful. It makes it hard to feed him, it makes it hard to work on self care tasks with him, it makes it hard for him to see and navigate in a space, and it’s hard on us as his caregivers because he can’t move for himself.

This is called a Special Tomato Chair. It’s made of foam and can attach to our kitchen chairs or to its special wheeled base so that we can push him from room to room while he sits. This enables us to be able to sit him at a table or tray and work on new skills!!

Medical equipment like this truthfully is quite expensive!! Even with us having private insurance through our employer and Medicare, getting medical equipment covered by insurance is a frustrating and monumental task and can take MONTHS to hear anything back. And they STILL can deny to cover it even when we know it’s needed. And this is just the first of many things we will need to have for him. So, if you were wondering what your donations go to through our GoFundMe link… it’s things like this! We were fortunate to be able to pull from that money to cover this chair so that we could have it arrive in five weeks instead of five months of fighting with insurance.

Look how much freedom it’s given him! Now we can properly work on feeding, reaching, and even some neck strengthening in a proper sitting position. 💙💙 If you watch this video, you can see him around 13 seconds realize he can see much better in the chair! https://www.tiktok.com/t/ZTAcFSFF4/

His Tummy Time endurance is definitely improving! Still not back to where he was before being hospitalized though. PT wi...
19/07/2026

His Tummy Time endurance is definitely improving! Still not back to where he was before being hospitalized though. PT will be adding some kinesiology tape this week to hopefully help trigger proper muscle activation.

14/07/2026

A few weeks ago, Levi’s speech therapist introduced him to this fantastic tool!! The z-Vibe is a vibrating tool used by speech therapists and OT for kiddos like Levi with sensory needs or muscular/neuro deficits. It vibrates and has different attachments that he can use for eating, chewing, and even writing when he gets older.

The cool thing about this is up until this video, we had never seen Levi be able to grasp and bring anything to his mouth with his left hand!!! Until the beginning of June, the left arm would primarily lay slack at his side. We rehabbed hard to even get him to move his arm around, but he still wouldn’t/couldnt *use* it. But now he can. His movements still are very uncoordinated and not fluid (due to the cerebral palsy). But, he LOVES this tool!! It stimulates the nerves in his fingers and hands and helps remind his brain how to turn on those muscles to grasp and bring things to his mouth. It also hopefully will help him with his oral aversion by stimulating the nerves in his mouth so that he can eat solids.

02/07/2026

Levi’s current favorite vision activity is playing with his Lightsaber! Recently Levi was diagnosed with CVI- cortical visual impairment Phase I. This means that while Levi’s eyes functionally are fine and he can see us, he has damage in the parts of his brain that process vision . In simple terms, he can see objects, but he does not know how to make meaning from what he sees. So he may see a spoon on the table, but he doesn’t know how to look at the spoon grab the spoon work on his hand eye coordination to bring the spoon into his mouth. He also loves hearing us talk to him and being near him, but he more often than not won’t turn and look at our faces, he’ll just listen to our voices. When he’s playing with toys, he will notice the toy and then he will look away and it may take him 20 to 30 seconds to work with the information in his brain to figure out how to grab for the object or play with it as you can see in this video he doesn’t immediately reach for the light.

His vision therapies require a lot of patience because it may look like he’s uninterested in an object, but really he just needs processing time! One of the other things that we do with him during vision therapy is reduce visual distractions around him. Sometimes this might be putting a blank black sheet around the area where he’s playing, or maybe putting a visor on his head to reduce visual noise above his head, or it may be playing with a light or shiny objects to help him focus on those better. You’ll also notice that I don’t say much during this video. One of the things for children with CVI is that it’s actually mentally taxing for them to work on focusing their eyes. So when we’re doing a targeted visual exercise, we stay in a quiet room with little visuals in his sightline other than the item we want him to focus on…we also might go on a dark room or turn the lights down. We also do a lot of cause-and-effect with visual items so that he understands if he touches something or moves an object the object can change or make sounds (in this video, every time I click to change the light it’s in response to him, reaching out and touching it)!

So when you hang out with Levi, just know he can hear you and he can see you! But it may take him a moment to look at you or focus on your face. Give him about 20 seconds to focus on an object you want him to see, and don’t take it away too quickly- his brain is just putting all the pieces together before he acts on it. Please be patient with him and continue to talk to him and show him things of interest and he will eventually be ready to turn and engage!

https://my.clevelandclinic.org/health/diseases/cortical-visual-impairment-cvi

30/06/2026

Baby Rave for Levi today! 💥 Today we spent 5 hours at the hospital for his EEG and follow-up with the neurologist. We got both improved news and an anticipated new diagnosis.

His EEG spikes have gone back to normal for the most part! There is nothing immediately concerning regarding seizures or brain wave abnormalities. However, while the active Infantile Spasms seemed to be resolved, there are some “notable” spikes coming from the right rear of his brain indicating that there is still the *potential* for focal seizures, but not necessarily guaranteed. For now we won’t be on daily meds, but we do have to carry around his rescue meds at all times in case of a seizure event.

There is some additional concern that the brain tissue the spikes are seen in may have optic nerves running through there so those may affect his field of vision, but it’s unclear as he’s of course too young to say. We pray not.

At the suggestion of our therapists, we asked her if she would be willing to go ahead and evaluate him for cerebral palsy diagnosis (CP). CP comes in a wide range of mobility levels from being completely unable to move any limbs, to only affecting the left side limbs, or maybe just the bottom have of your body. We knew that this was highly likely to be the road we were headed down especially after the meningitis in December, as it is a common “side effect” and he has very poor control over his arms, extremely low muscle tone (ie no head control and cannot sit up), and favors one side (right) more than the other. Usually providers won’t give a CP diagnosis until a child is 2. But, seeing as it’s quite clear in Levi’s case, we wanted to get this formalized because it can open doors for insurance to cover more mobility and positioning aides that we need to do life with him! It also gives us the ability to pursue some several week long intensives for mobility therapy.

While this is a HUGE learning curve, a lot to digest and understand for us, and we grieve the life we *thought* our son would have and we would have with him, we are grateful to be getting some answers so we can support him in the best ways possible! We have no idea if Levi will ever be able to walk, feed himself, or even sit up. But one thing’s for sure-we will never stop praying and never stop doing all we can to help him have as much autonomy as possible!!

https://www.mayoclinic.org/diseases-conditions/cerebral-palsy/symptoms-causes/syc-20353999

Okay, to start catching us up since the last update… in March Levi was diagnosed with infantile spasms. These are a rare...
27/06/2026

Okay, to start catching us up since the last update… in March Levi was diagnosed with infantile spasms. These are a rare form of epilepsy that usually appear around eight or nine months (which was Levi’s adjusted age). Fortunately, Levi’s neurologist expertly diagnosed them just from his EEG, even though he wasn’t exhibiting any physical signs of the seizures yet! Unfortunately, the treatment for them is extremely intense and exhausting for both caregivers and baby.

Levi had to do a combo treatment of steroid and anti-epileptic med. Y’all know how grown people get “‘roid-rage”? Yeah, imagine that level of rage but in a tiny baby body that doesn’t even know what’s going on!! We were blessed that we were able to give Levi the oral form of this medicine instead of having to give him shots in his thighs twice a day. But, the stress and exhaustion and anger from the steroid was insane. We watched out baby slip away from us for a month. There was literally nothing but a hollow emptiness behind his eyes. He didn’t smile, he didn’t talk…he barely moved. He never wanted to be awake. When he was awake, he was insanely hungry, angry, irritable, and frustrated. When it was time for sleep, the steroid caused his heart rate to drop every night and his pulse rate alarms would go off all night. Many times he would wake up and stare at us for two hours, unable to go back to sleep. The steroid also caused his muscles to tighten and he developed huge knots in his neck, which made it hard for him to turn his head or move his arms. On top of this, the steroids make you immunosuppressed so we also could not go anywhere and had to keep our circle extremely small (just us and Danielle’s parents- aka “Grand-care” around all month) and had to cancel our spring break family trip. This also meant Grammie and Poppi had to reduce their public outtings to keep him safe. We wore masks at work. We would come home from school and do a COVID-type sanitizing & change of clothes before we interacted with him. So, as you can imagine the month of March was absolutely horrible for our family especially as Koedy & I continued to go to work while getting zero sleep and having an angry baby at home who couldn’t be comforted. We truly were just walking around in a an exhausted and stressed fog. 

When we started weaning the steroid, it literally brought tears to our eyes as we suddenly would get just TWO MINUTES of “normal” Levi breaking through. A small smile or babble before disappearing back into the fog and depression of the steroid. We have continued the second med- vigabtrin until this month. While it’s side effects weren’t as severe, it can cause muscle weakness. This has been problematic because Levi already had hypotonia/ reduced muscle tone which causes him not to be able to sit up on his own, roll over or even hold his head up by himself. Being on this medication meant another several months where we weren’t making any progress.

On Monday, Levi will go in for his follow up EEG. We’re praying that weaning the Vigabatrin has been okay and that is seizure activity is now greatly reduced or completely gone so that he does not have to start this process again!!

https://my.clevelandclinic.org/health/diseases/22494-infantile-spasms

https://my.clevelandclinic.org/health/diseases/22223-hypotonia-in-babies

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