VNS, Spinal Fusion, Xcopri (Cenobomate)

 It's hard to believe I haven't updated Levi's blog in six years! He turned 15 last month, which is also hard to believe. He's doing very well and thriving despite his medical complexities. 

Vagus Nerve Stimulator

The Vagus Nerve Stimulator has worked very well for him! After having it in place for five years, the battery died and the device was surgically replaced. If we were unsure how much seizure control it provided, we learned very quickly once the battery went out that it was greatly helpful, indeed! Not only did the seizures increase, but some of the seizure types that had become nonexistent came back in full force. Once the device was replaced, they were quickly controlled once again.

By controlled I do not mean that they went away. Levi is not seizure free and never has been since the original Group B Strep Meningitis infection when he was three weeks old. But with different therapies, mainly the ketogenic diet, which he endured for three years, he has gone from over 200 seizures a day down to 20-30 or so. 

Levi and his sister on his 15th birthday.

Xcopri (Cenobomate)

Medications typically make the seizures worse. Benzodiazepines work well for him, but are too sedating to take during the day. His neurologist at Cardinal Glennon Childrens Hospital in St. Louis suggested Xcopri (Cenobomate) which works with GABAA receptors and therefore offered a more likely result because Levi responds to that type of therapy. It worked! His seizures decreased dramatically. He still has daily seizures, but they are so few and far between that we rarely need to use the VNS magnet to suppress them. The VNS does continue to automatically send pulses to his brain at, I believe, 30 second intervals. He also takes Klonopin (Clonazepam) at bedtime, and his rescue med is Clorazepate. 

Post-op smiles.

Spinal Fusion Surgery

Over the past year or so, his scoliosis worsened at an alarming degree. Though we usually only see doctors at Cardinal Glennon, we were referred to Dr. Luhmann at St. Louis Childrens Hospital by a friend whose son sees him. He is a spinal specialist. We liked him right away. Though we were against surgery before the appointment, we scheduled it before we left. Dr. Luhmann did not push us into the decision in any way. He left us with the choice to proceed with surgery, make a future appointment to discuss it again and give us time to think about it, or simply decide against it. Through the course of discussing what signs of pain we would see, if any, we learned that Levi was already experiencing pain and so we jumped in with both feet. Our primary duty to Levi is to keep him as free from pain as possible. Also, his lung capacity was decreased and left him in danger of pneumonia. He had had pneumonia three times in the last year, and in March of 2025 it was also accompanied by pancreatitis. It was a scary decision to make, but Patrick and I were both in complete agreement that the surgery was necessary.

So in July, 2025 we headed to STL Childrens for a scary experience made more frightening because we had no experience with that hospital and had no idea what to expect. We love Cardinal Glennon. I'm happy to report that our experience at Childrens was wonderful and I can't say enough about the excellent care he received there, outside of one respiratory therapist who hurt him and I banned from ever coming into his room again. 

Spinal fusion is a LONG surgery. It requires bolts and rods to hold the spine in place, but on the positive side it is a one and done surgery. It was not an easy operation or recovery, though he did very well and the surgery team was very happy with his progress. He developed a severe case of pneumonia, a complication that we were aware was possible. He was in the ICU for a few weeks for that reason. The care he received was exceptional. One thing I greatly appreciated was the pain team. They were with him from surgery through his entire stay. At first we had some trouble with floor doctors refusing better pain meds and failing to contact the pain team, but we put a stop to that very quickly. I've learned over the course of the years with Levi that if he needs something I have to be his advocate and often that means getting angry to get what he needs. That's not a natural ability of mine, but believe me, it gets easier!

Once he was recovered from pneumonia, they sealed his incision down the full length of his back with surgical glue. This was my decision, and I should not have done it, because during the VNS surgery his skin reacted to the glue. But since it was the only time he reacted, and glue is so much easier to deal with than bandages, and better for healing, I decided to try it. BIG MISTAKE! He reacted severely. I had to peel the glue from the incision. It was horrible, I felt traumatized, and so guilty that I put him through all of the extra pain. It took weeks for it to heal. He had to go back to bandages that I had to change out every day, and then a wound vac had to be put back on. This was much better, though, because I didn't have to worry about changing the bandages and it healed more quickly.

Caty, Dr. Luhmann's nurse practitioner, was our contact during this time. She could not have been more wonderful! She quickly answered every frantic message I sent her. We had several post-op visits with her while navigating the incision healing process. She was capable, knowledgeable, and helped me feel more confident in caring for him. 

Once the recovery was over we began to realize just how much pain he was in pre-surgery. He smiles all the time and even laughs often. He's about to receive molded seats for his wheelchair which should take care of any discomfort he feels in the chair. It was a difficult time, but I would do it all over again to get the results. He's doing great, and that's all that matters!

Our family Christmas 2025. 

Vagus Nerve Stimulator, CBD Oil Fail

Last week, Levi had the Vagus Nerve Stimulator surgically placed under the skin on his chest.  This will send electrical pulses to the brain every five minutes to keep the seizures at bay.  He is currently having 40-50 seizures a day, which is an educated guess.  The majority of his seizures are very quick, lasting only a few seconds, peppered with longer, harder seizures lasting one minute or so, where his head and face tick, he vocalizes, and sometimes laughs hysterically.  He has Lennox-Gastaut syndrome, a condition that often follows on the heels of Infantile Spasms, which he contracted at five months old.

We did try CBD oil before resorting to the VNS.  First we tried Charlotte's Web, a strain of cannabidiol well known for having a great impact on childhood epilepsy.  It did not work for Levi.  His cognition, mood, and muscle tone improved, but the seizures were unaffected.  After about a year we realized it was the cause of his extreme insomnia.  I know, CBD typically aids in the ability to sleep, but we have learned not to ask Levi to be typical!

About a year later, we tried the new CBD prescription medication Epidiolex, which is specifically for Lennox-Gastaut and Dravet Syndrome.  Again, we saw an improvement in cognition, mood, and muscle tone, but the farther we increased on Epidiolex, the more his little body was wracked by seizures. 

We were disappointed, but not surprised.  Every anti-epileptic Levi has ever tried has worsened the seizures.  At 18 months old, he was having more than 200 seizures a day, while taking five different epileptic drugs.  He'd exhausted the supply of medication for his age group, so we turned to the Ketogenic Diet.  Success!  After some trial and error, a feeding tube, and then a colostomy, his seizures decreased substantially to around 20 a day.  He was weaned off all meds and maintained the diet for three years before his body could no longer tolerate the huge amounts of fat.

Since Levi tends to respond to alternative therapies, and we are again out of medications, we moved on to the Vagus Nerve Stimulator.  The device was turned on this afternoon.  It's too early to know, of course, how this will play out.  He did have a longer seizure at one point, and we swiped the magnet over the VNS as instructed.  The seizure stopped!  Over the course of the next several months, the strength of the electrical pulses will be increased every two weeks.  We are praying this finally does the trick!

PRAY FOR LEVI: CBD Oil Update, Selective Dorsal Rhizotomy, Eye Ga...

PRAY FOR LEVI: CBD Oil Update, Selective Dorsal Rhizotomy, Eye Ga...: CBD Oil Update There's a lot going on in Levi's life these days.  Since starting the Charlotte's Web strain of CBD oil (oil...

CBD Oil Update, Selective Dorsal Rhizotomy, Eye Gaze Technology

CBD Oil Update

There's a lot going on in Levi's life these days.  Since starting the Charlotte's Web strain of CBD oil (oil from the marijuana plant that contains only medicinal cannabinoids, not the THC compound that causes a high) he has gained so much strength.  We initially began using Charlotte's Web for seizures, and sadly we have not seen much relief in that arena, but he only has a handful of daily seizures now, and so the epilepsy is not causing him much trouble these day, thank God!

What we have seen, though, is a huge increase in his cognitive ability, strength of body in areas such as head and trunk control, GI relief, and more.  CBD oil has taken a child who was in daily pain and turned him into a happy boy who greets the day with a smile, and ends the day in the same manner.  It is truly a Godsend!

Charlotte's Web CBD oil is available across the country with no prescription at CWHemp.  Levi currently takes .5 ml twice a day of the Everyday Advanced oil.  Since it isn't covered by insurance and it's very costly, we will remain at this dose for a while.  In the future, however, we hope to see better seizure control with an increase in dosage.

Levi hanging out with Dad.

Selective Dorsal Rhizotomy

Selective Dorsal Rhizotomy is a surgery for those with spastic cerebral palsy, to alleviate the spasticity (extreme tightness) in the muscles.  This is an explanation of the procedure, from the St. Louis Children's Hospital website.

"At the time of the operation, the neurosurgeon divides each of the dorsal roots into 3-5 rootlets and stimulates each rootlet electrically. By examining electromyographic(EMG) responses from muscles in the lower extremities, the surgical team identifies the rootlets that cause spasticity. The abnormal rootlets are selectively cut, leaving the normal rootlets intact. This reduces messages from the muscle, resulting in a better balance of activities of nerve cells in the spinal cord, and thus reduces spasticity."

Though Levi always attends Cardinal Glennon Children's Hospital in St. Louis, this procedure is done by a specialist at St. Louis Children's.  Though it is typically done to help children with CP walk better, Levi is being considered for the surgery even though he is non-mobile, due to the extreme tightness in his leg muscles, and especially the turning in of his feet.  He receives Botox treatments in his muscles to loosen them, but the muscle for the feet are so deep they can't be helped with Botox.  It is our hope and prayer that the dorsal rhizotomy will help.  Another huge plus is that the benefits of this procedure last for a very long time.

We have the packet almost completely filled out, and will be waiting for word from STL Children's as to whether he is a candidate.

Levi and his sister on a field trip to the Pumpkin Patch.

Eye Gaze Technology

Eye Gaze Technology uses specialized equipment that works with eye tracking.  Using something like this, one can make choices, speech, and other vital communication skills using only the gaze of an eye.  For someone like Levi, who is non-verbal, but can understand what we say, this makes communication much easier for him.

Though he has learned to shake his head for no, the limited ability of his body keeps him quite trapped, unable to tell us what he thinks or wants.  Eye gaze technology has the potential to open up the whole world to him!  The process is likely a long one, but we are hoping to do a trial soon to see if this is something that Levi could learn.  We all believe he will be very successful at this.  His vision teacher mentioned that another student she sees does very well with this technology, and Levi's vision and alertness is more advanced than that child's. We are praying that this will bring him out from the loneliness of  his own mind, to be able to communicate his likes and dislikes, wants, and desires to us!

For the Love of Levi

Since the very beginning, when Levi was diagnosed with Group B Strep meningitis at 3 weeks old and spent a month at Cardinal Glennon, I knew I would write about the challenges and blessings we faced during that time.  It may have taken me six years to get motivated to write it down, but I've finally pushed aside the procrastinator in me and set to work on Levi's story.  Now almost finished, the book will be coming very soon to the Kindle store and paperback.  Stay tuned!

Charlotte's Web Hemp Oil, Day 2: Surprising Discovery

The second day on CBD oil we have continued to see positive changes in Levi.  Most notably, his vision seems much sharper.  His eyes are working together and he's focusing well, really studying what he's looking at.  He's more interested visually, and follows his little brother and sister as they run around the room.

He's been so happy, kicking his legs and laughing.  Moga (my mom) was here yesterday, and he said her name!  This is not the first time he's done so, but it's been a long while since it's happened.  Usually when he gets that excited, it ends with a seizure, but not today!

Already, Levi is stronger. He braced his feet on the floor while sitting in his feeding seat, and tightened his entire body until he was basically standing while leaning against the chair!  This lasted off and on for about an hour.  Levi has tried so hard for years to get himself out of that chair, at times successfully, plopping on the floor.  (No worries, the chair sits on the floor, he doesn't have far to go.)  This was as close to getting out of the chair as he's come :)

Any type of change in lighting causes a startle reflex, sometimes ending in a seizure.  I let Baby J play with the light switches, watching Levi as he did so.  The startle was still there, but almost as if it were a habit.  His head would come up but there was no period of confusion/staring, and it didn't turn into a seizure.  Several times he did not startle at all :)

Patrick made an amazing discovery last night.  Though we paid for the highest strength of Charlotte's Web, and the box we received was correct, the actual product inside was the company's mid-strength hemp oil.  So, Levi has actually been getting half the dose we thought he was.  So, we increased the dose this morning, and I'll be calling CW Hemp soon to rectify the situation.

Stay tuned to Levi's journey with cannabis oil.  Wonderful things are in his future!

I think these pics show what may have been one of Levi's first seizures.  He was four days old here, and I thought it was funny how he kept stretching out.  In retrospect, it might have been the first sign that something was wrong.

Charlotte's Web Cannabis Oil, Day 1

Charlotte's Web was delivered yesterday evening around 6:00.  The wait has seemed interminably long since I placed the order on Friday.  Levi received his first dose of CBD oil at 6:30 with his dinner.  

The cannabis oil is first and foremost to help, and hopefully eradicate, the daily seizures that Levi has due to having Group B Strep meningitis shortly after birth.  He also has hydrocephalus with a VP shunt, cerebral palsy, developmental delay, and more.

The day before, I counted seizures to see if my estimate of 5-10 a day, recently going up to 20 a day, was accurate.  It was.  Levi remained within the 10-20 range the past two days.

Yesterday was not a great day for Levi.  He was stiff, having gas pains, and uncomfortable.  That ferocious frown was on his sweet little face from time to time.  He stayed in his feeding seat most of the day, as he was not comfy in bed at all.  

Daddy giving Levi his first dose of Charlotte's Web Cannabis Oil, from the Stanley Brothers' CW Hemp in Colorado.  Though he is fed via feeding tube, the marijuana dose is mere drops, so we opted to feed it by mouth.  He didn't seem to mind the chocolate mint flavor :)

Following the 6:30 dose of marijuana oil, we noticed a difference within half an hour, starting as early at 10-15 minutes after the oil was given.  First, his eyes brightened and he was more awake and alert.  He has alternating exotropia, which means his eyes can roll to either side.  It basically looks like two lazy eyes.  Levi also has cortical visual impairment, a neurological condition that has greatly improved since he was a baby.  At first, he was legally blind, but with vision therapy he can see and even track.  He wears glasses for farsightedness.  His eyes can work together, but lately, even his glasses haven't helped a great deal, and he works hard to get them off his face.

As you can see in this pic taken directly after CW Oil, Levi's eyes are not straight.

After Charlotte's Web, his eyes almost equalized, and he was focusing on objects.  I put his glasses on and, for the first time in many months, I saw an improvement with them.  He was interested in everything, looking all around, landing and focusing on different objects.

He ended up being so excited he stayed up really late.  He kept our night nurse, Stephanie, busy for quite a while.  I think she liked it :)  

This morning, he had has second dose of Charlotte's Web hemp oil at 6:30 a.m.  He was awake, alert, and stiff with gas before the dose.  In the first 20-30 minutes he was restless, had a few seizures, and moved around as if he couldn't get comfy.  Then all at once, he calmed down, his eyes focused, his body relaxed, and his noisy breathing  quietened.  He fell into a restful sleep.

Levi after second dose of marijuana oil.  He's resting well after his exciting night :)

One thing I want to stress to parents who are looking for Charlotte's Web for their children is that, as long as the state where you live has legalized medical marijuana, and probably specifically CBD oil, you can simply hop online and buy the product from CW Hemp.  You DO NOT need a prescription.  However, insurance will not pay for it this way, and it is expensive.  But if it can help your child lead a happier, healthier life, it's worth it!

Waiting For Charlotte's Web Oil

Charlotte's Web Cannabis oil, which has helped countless children with intractable (not controlled with medicine) epilepsy, is due to be delivered tomorrow.  Our neurologist said sometimes results are misleading because parents are so excited to try it, they report better seizure control with CBD oil than may be true.  So I thought I would document exactly what's been going on with Levi before we start Charlotte's Web.

As I told the doctor, the ketogenic diet was the only thing that worked at all in regards to seizure control for Levi.  Traditional medicine either made the seizures worse, or had such a sedating effect that he slept all the time.  The ketogenic diet took his seizures from 200-300 a day, down to a handful a day, over the course of three years.

Though the high fat: low carb/protein diet was hard on Levi's system, it was a miracle for Levi, and I would suggest it to anyone dealing with intractable epilepsy.

I estimate that Levi was having 5-10 seizures on a normal day, and the past few weeks, that amount has gone up to around 20.  He's had a fever, so that may have something to do with the increase.  As today is hopefully the day before he starts Charlotte's Web, I decided to count seizures and get an accurate picture.  Of course, every day is different, and this will be just a snapshot of one day, but at least it will give us a good idea of his true seizure activity.

He's been awake for three hours, and has already had 5 seizures, one of which was very hard, and he fell asleep after it was over.  These are rare for him, but apparently, they still happen.  The others are his normal 3-5 second jumps, jerks, etc.

Before the seizure, he was awake, alert, and happy.  Now, even though he slept for a little while, he is tired and his breathing is a bit labored.

We are looking forward to the delivery of the cannabis oil tomorrow, and plan to start it immediately upon arrival.  Please pray for Levi.

Charlotte's Web CBD (Cannabis) Oil

I can't believe I'm actually writing this right now.  For the past few years, ever since I heard of the amazing benefits of the strain of Cannabis oil called Charlotte's Web, I've looked forward to the day when Levi could try it.

NOTE:  This marijuana oil does NOT cause one to get high.  There's no psychotropic effect at all.

For those of you who don't know, Charlotte's Web is named after Charlotte Figi, the first epileptic patient that was helped with this oil.  She was five-years-old, and had lost the ability to walk, talk, eat, and more, when she began this medication.  She was having 300 grand mal seizures a week.  After the first dose of CBD oil, she was seizure free for a week.  Now, she only has a seizure once in a great while, typically while she's sleeping.  Charlotte has regained all these abilities and is a normal little girl again.

We saw our neurologist today, and he agreed that Levi is an excellent candidate for CBD oil. Illinois does not have a dispensary that produces this strain of marijuana oil, so we have to order the hemp oil from Colorado. This is wonderful because we can start it right away, but we can't go through insurance until Illinois produces the strain. I'll receive it sometime next week!!!

Although we know that, just like any drug, it works differently for every person, we are praying that it will take away his seizures for good.  I plan to update frequently once we start Charlotte's Web, Please pray that we see amazing results.  This has the potential to help Levi with every issues he has, from seizures to cerebral palsy pain to vomiting and nausea, and even more!

In Hospital With Nasty Adenovirus

Last Wednesday (it is now Monday) Levi was admitted to the hospital with breathing problems, congestion, sleeping almost nonstop for three days, and fever.  Of course, these are all symptoms of a shunt malfunction or infection.  (The shunt drains excess liquid from his brain and empties into his stomach).  Thankfully, the shunt is in great working order.  Levi has a nasty adenovirus.

This past week has been rife with ups and downs.  He will get better just to get worse again.  Finally, I think, we have turned the corner for the better.  Last night, Levi's breathing was much worse, coughing with just about every breath, so much congestion his nose and mouth were being suctioned very often, and he was just all around miserable.

The doctors ordered albuterol breathing treatments, which he'd been getting as needed, scheduled every four hours, with treatments in between if needed, and an airway clearance vest that literally shakes the mucus loose from the chest.  He loves it!



All morning and the greater part of the early afternoon he sounded horrible.  Even the respiratory treatments were not helping for long.  Once the treatments started coming closer together, and we cuddled together for a long time, Levi was able to relax.  His breathing settled, and he was able to sleep well.  Here's hoping that the worst is over and good days are on the way!