If any of you readers are wondering why I am breaking this story up in parts, it’s because it is 16 years worth & each day was & is something different. A little review from part 1 in the previous blog. Jack began having seizures at 6 months old (100’s a day). For 6 months, he suffered tremendously with daily seizures of multiple types, testing, ER visits, shots, & more. Just after his 1st birthday, Jack started treatment for his medication resistant epilepsy in the form of the ketogenic diet. The diet was bliss for our family of 4 for 2 1/2 years, no seizures & no seizure medications for such a long period-we thought we found our cure. Sadly, that day ended in a bout of sickness that brought Jack out of remission. It was also around that same time I found out we were expecting yet another child.
Newly pregnant with a 3 year old & a 4 four old, I just did not see how I was going to manage things. I never had a problem parenting the boys, loved being a stay at home mama. We would read books all the time, color, play outside, we were on our own time schedule. Being a parent was not an issue, it was being a parent to a child that had to be watched every moment of the day. I was scared to death to have our third child, terrified that she may end up with same disorder that Jack had. At this point, we did not know what Jack had other than medication resistant epilepsy even though he had undergone a series of genetic testing to rule out any number of disorders, I always knew it was something other than epilepsy.
In January of 2005, Jack woke up with a high fever, soon a seizure followed. This was his first seizure in 2 1/2 years. It was a hard grand mal seizure. Having gone so long without any type of seizure at all, I knew something was wrong. We rushed him to the neurology clinic in Charlotte only to be told there was nothing wrong with him by his neurologist. Well that didn’t go over too well with me. We ended up taking him to Presbyterian Hospital in Charlotte. After investigation, it was determined that Jack had a strep infection in his bloodstream (which I say came from the buggy at Walmart)! After multiple seizures, medications to treat the fever & 5 days in the hospital, Jack got better with the strep illness but never regained seizure control. The seizures were back with a vengeance! I was ticked with his neurologist that told me nothing was wrong with him, so we moved his neurology care to UNC Chapel Hill. A mama’s instinct is rarely wrong! Jack was also still under the care of pediatric electrophysiologist at Duke University for his heart condition & on his heart medication. Shortly thereafter, Jack was weaned off the ketogenic diet & was allowed to eat & drink anything.
The fit of seizures that would follow Jack’s strep illness was maddening. Instead of a baby having so many seizures, I now had a walking, running, talking, active toddler to worry about seizing all day. The same seizures that Jack had as a baby were now rearing their ugly head in the toddler years. Loading up the boys & riding was now not as easy to do since both boys were very active. He was having 100’s a day of the arm trembles, head falling over, full blown convulsive seizures, even seizures that would quickly interrupt his speech mid-sentence. At this point, my husband had constructed The Berry Patch. For those that don’t know of our business, we own a homemade ice cream shop that’s in the shape of a huge strawberry/farm market & are strawberry farmers as well as other crops. Lee also sold the poultry farm in order to devote his time to his first love, farming. Those days were harder than when Jack was a baby. Not only did Jack have this huge seizure condition, Coleman (our oldest) was in speech therapy, Lee left the house at 5:30am & wouldn’t return until 7-8pm depending on what the season was, I was pregnant, plus my parents still worked full-time jobs. There were days I wouldn’t see anyone other than people at the doctor’s office or speech therapy facility. By the time Lee got home, he was wiped out from his work day & was in bed an hour or so within getting home. I was a one woman show, scared & tired. There was NEVER a day a babysitter was called in-who else could handle such turmoil? I prayed everyday for some sort of relief to come to Jack, whether it be complete healing or a new medication, but no relief was found for quite a while for the seizures & little did I know things were going to get worse.
I pleaded with Jack’s cardiologist at Duke to fix the heart issue of WPW when he was 4 thinking that this may have something to do with Jack’s seizures (this can happen, but not in our case). He agreed, in August 2005, Jack had a cardiac ablation to repair the extra pathway that caused the high heart rate he experienced after birth, this did not stop or lessen the seizures, but at least I could safely say that was not the cause. In times like that, you get desperate. Not only was this amount of seizures affecting Jack, it was affecting our whole family. I consulted a psychic & a medium trying to see if they could tell me why this child was going through this. I was told to look into his pancreas & lungs, I soon realized what a fool I had been. I also took Jack to an acupuncturist-I will say that it didn’t help Jack but has helped me & Lee…another story for another time.
Our third child Ava was born November 14, 2005, super healthy & a really good baby. The boys were excited! I remember the day I had her, my parents brought the boys to the hospital to see us & Jack started having seizure after seizure during his visit. The plan was for Lee to stay the night with Ava & me at the hospital, but it was more sensible for Lee go home with the boys & take care of Jack. Mornings & evenings were the worst time of day for Jack with the seizures. He had clusters every single morning lasting about 30 minutes, sometimes after the clusters of seizures, he had a big one. You could count on 7am seizures everyday & 7pm seizures every night. I knew I had to get home, I told the doctor I wanted to leave the day after delivery. Thankfully, I was blessed with easy pregnancies & deliveries with all three so I was able to leave & get back to motherhood.
Jack could not sleep alone since so many of his seizures were during the middle of the night. We had a full bed! Ava was in the bassinet next to me along with Jack & Lee. When we moved into the home we were in at that time, we purchased all new furniture (at that time we only had Coleman). Lee & I had picked out a queen size bed. Once home I & got to thinking that a queen was just not going to be big enough for us. I quickly called the furniture store without consulting Lee cause that’s what women in charge do & said, send us a king. Boy, was Lee upset! I think it was $400 extra & I blew it for a few more inches. Little did Lee know that we would need those extra inches, I like to call those nudges from God. There were times when all 3 kids, Lee & myself were snuggled up together due to sicknesses or just cuddle time.
In March of 2006, something had to be done to help relieve these seizures. Jack had tried nearly every form of medication known to man & was on adult size doses of them. We opted to try an implant called a Vagal Nerve Stimulator (VNS). The VNS is about the size of a dental floss box & would be inserted in his chest & the wiring would be threaded up in the vagal nerve along the side of his neck. The VNS sends impulses to the vagal nerve in hopes that the seizures would reduce & not be as hard on him. This worked well for about 6 weeks which is what the epilepsy world calls the “honeymoon” phase. This was the case for everything we tried for Jack. Not only were we dealing with this cruel seizure disorder, but Jack had strep all the time. The first & sometimes the only symptom being a high fever which resulted in severe seizures. Once the strep illness started at age 4, we dealt with that for 5 years-sometimes 2-3 times a month.
Also during this time, my brilliant (he really is smart) husband decided to start another business venture in our neighboring town of Rockingham, NC. The town we live in is small, Rockingham isn’t a whole lot bigger. The business was called Sundae Scoops. We served hot dogs, chicken strips, & of course our homemade ice cream. Gluttons for punishment you might say & I would totally agree! I never got to work at The Berry Patch because I was confined to being home but that was okay, I knew my children were safe. I did work the second shift at Sundae Scoops. Lee setup first shift, went to manage The Berry Patch, he then came home around 4pm & I was out the door as soon as he walked in only to return after 11:30pm. I was still nursing Ava, I would nurse her at 3:30pm & then again as soon as I walked through the door that night. I couldn’t go to sleep until after 1am because I was amped up from working, only to start my day again at 7am getting Coleman our kindergartener ready for school. Sundae Scoops business was sparked because bills were piling up, we tried to do anything we could to make money. One of my business ventures was driving an hour from home to a customer return store for QVC & HSN (the shop at home stores). I would purchase all of the SPANX undergarments available to list on Ebay. I also cleaned out people’s closets & sold clothes on Ebay. This was a nice hustle for quite sometime, but was not nearly enough to help with the mountain of medical bills we were facing. One of the more amusing SPANX tales from my days of sales: I shipped a pair of the undergarments that promised ladies a sleeker look. I did not open the package I received from the store I purchased them from-BIG mistake. The lady emailed me as soon as she got them to tell me that a used maxi pad was in the crotch of the SPANX! I was mortified of course & sent her a refund. I learned that inspection was a must before selling these any more!
We were a self-employed family & had a child with health problems, monthly insurance premiums were outrageous (still are), plus our deductibles were high. It did not take Jack long to meet his deductible but he also maxed out several services in a year, one being his pharmaceutical service. The rescue medication we used for seizures lasting over 5 minutes was $100 with insurance, once we maxed out the pharmaceutical coverage, that mediation became 100’s of dollars which was paid for out of pocket. We were having to use this medication several times a week! The surgery Jack had for the VNS we later found out that insurance would not pay ANYTHING towards the bills because the FDA had not approved the surgery for children under 12. The new business in Rockingham was failing, after a little over a year we folded on Sundae Scoops & had to sell our beautiful home & move into an awful rental home. This rental was nearly my demise. It had brown paneled walls which is fine if you like that but so not my jam! I wanted my beachy tones of sand & aqua walls. Only two bedrooms for a family of five. Ava was sandwiched between the washing machine & dryer in her crib & one bathroom that was just gross. The silver lining about that move was our neighbors. My aunt Sue lived right beside of us. She was a great help to me. This was the first time I could experience some sort of freedom. I could call her & say watch the kids for me while I ride to the grocery store…amazing! Also, the kids had a friend next door too. She was wonderful & gave Coleman & Ava a friend to ride bikes with, ball, whatever-something they never got to experience before because of the severity of Jack’s health issues. This again was one of God’s nudges.
Part 3 will continue soon. The picture above is of all three kids, Coleman is holding Ava & Jack is enjoying one of his first ice cream cones from The Berry Patch. Thank you all for your kind comments!
3 thoughts on “Part 2…Maybe you will understand the statement the Young & the Rest-less!”
thank you for taking the time to share. I’m wanting to say that I’m enjoying reading your blog, but not sure that’s the right term. I am finding it informative and I had never heard of dravets before meeting you. Keep writing!
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Amy thank you for sharing this journey with us. I continue to pray for you and your family.
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Love your GUTS FOREVER!!!
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