Prepping for Hibernation & a few other things

In elementary school, most of learned about hibernation. When we think of hibernation, we often think of bears. A bear packs away the food prior to winter in order to store calories to make it through the cold winter days & nights. When I learned about hibernation in school, I did not realize I would later live with a bear that practices hibernation at various times all through the year! Jack has eaten more of my home cooking over the last two weeks than he has in 3 years! I’ve made three tremendous pots of chicken & dumplings in 5 days. All we hear Jack say is “dumplings, dumplings, dumplings”! He has literally turned into Jethro Bodine! I only wish we had the clout & house the Clampetts had & of course that cement pond, & who could forget the wooden stick Granny threatened to beat Jethro with all the time-that might come in handy when dealing with Jack & Lee from time to time. Wouldn’t mind having Mr. Drysdell as a neighbor either! As Jack began eating his way through our house, I thought he was eating to become stronger, I only wasn’t sure how the strength would come into play. He really was frail prior to his increased appetite, when you sustain on only a cup of applesauce a day, what can you expect? I thought to myself many times as Jack’s eating increased, that he was eating for an attack. Turns out I was right.

Jack has a hard time, finding middle ground is not something his life was designed to do. He’s either plagued by the seizure monster, not feeling well, or into something that causes trouble. These are three circumstances that I have had to accept being his Mama & that wasn’t an easy feat. I am a fixer. I want to help people the best way I know how & fix their problems. This holds true for not only our kids, but for everyone. If there is something I can do for someone, I’ll do it if it will make their life simpler. I can not fix Jack. I’ve tried every homeopathic remedy along with every medication there is. I could absolutely kick myself for falling behind on what was a near disaster this past weekend. In fact, I have made a note to myself as a reminder that when Jack’s appetite increases so drastically, that I need to make medication changes to compensate for the increased caloric intake. When I tell y’all he has eat, he has EAT! Since Christmas, he has woken up everyday eating chips of some kind. He is currently on a Chester’s Cheese popcorn kick, eating three large bags a day plus plain Lay’s chips. They must be only Lay’s, his extravagant self gets that from me, I’m a Lay’s girl. I bet the inventory takers at the Ellerbe Food King, Dollar General & Family Dollar wonder why the sudden increase in Chester’s Cheese! He wouldn’t touch cheese puffs in the past because they turned his fingers orange, now he can’t get enough & three bags a day aren’t enough. There is cheese dust all over our house. I find it on various things like my dresser, the soap dispensers, my clothes-I am his napkin! He is also on a Fiji water kick, the expensive square shaped bottle. There is some evidence that Fiji water can help some that suffer Dravet syndrome & other epileptic type syndromes, something about the silica in the water drawing out aluminum in the brain. He ironically & suddenly got on a Fiji water high the day after his seizure/aggression troubles, so there’s that expense now. This is his trashcan in his room in less than three hours, and also a picture of him laid up on the bed eating them without a care in the world other than when the next bag coming.

Last Sunday, I put out an urgent prayer request for Jack on Facebook. He had three grand mal seizures & tons of little ones in less than 10 hours on that day. It’s been years since Jack has experienced violent & multiple seizures like that. The first one, he went to sleep right after for about an hour which is the ideal situation for him for recovery after a seizure. Some people experience aggression after these types of seizures which is what happened following the last two. Right after the second grand mal, Jack walked into the kitchen & collapsed. After grand mal seizures, Jack is disoriented, weak, & loses his ability to speak for about an hour. If there is ever a time for him to be violent, it is after a grand mal, but it is still extremely scary. After he collapsed, Jack started kicking the floor like he was trying to knock a hole in it. It was Lee, Ava & myself home with Jack during that time. He then started grabbing everything that was in site, knocking over barstools, kicking the trashcan, throwing the rug, etc. As we called for backup in case he got even more out of hand, we let him has his fit without intervening because that could possibly mean we or he would get injured. As backup made it to the house, we had a porch full of people waiting to help restrain Jack if needed. He finally came back to himself & immediately started crying. Jack hasn’t cried in years. This was heartbreaking because I knew then he didn’t realize what he was doing in that moment but as he was coming out of it, there was some recollection about what he had done. About four hours later, he then had yet another seizure. This one, I stayed in his room with him during the whole event. He was on his bed, wanted to get up right after the seizure occurred but I was able to get him back down, but sure enough, he kept raising his fist like he was going to hit me. I talked comforting & quietly to him & he would put it down, only to lift it again a few seconds later. This went on for 30 minutes. At that moment, I was as spent as Jack. My heart was breaking because I didn’t know what the night had in store for us. I called Lee’s sister to come spend the night with us in case Jack had to go via ambulance to the ER to break the seizures and/or violence so she could stay home with Ava. After calling the peds neurologist on call at UNC, we decided it best to give extra meds to help get us through the night & avoid a trip to the hospital during this pandemic. I prepped myself to be ready for a hospital visit, laid out clothes to slap on quickly, shoes out, medication list out, dishes put up & clothes put away. With Covid restrictions & my nerves tore slam up from the threat of violence on Jack’s end, I told Lee he would have to be the one to go in with Jack through the ER. I can’t face that aggression alone. I handle all the medical stuff, but I absolutely didn’t want to have to go through that, it scares me beyond belief.

I ain’t gonna lie, our night was tough! Jack was awake at 2:30am wanting to get in bed with us.I always deny him sleeping with us, it’s worse than sleeping with a bed of wild hogs, but I couldn’t this time because of the predicament he was in earlier. So it was Lee, me in the middle & Jack in our king sized bed. Of course being a man, Lee slept, I did not. Jack was on me like white on rice. He tossed & turned, kicked, thrashed, sat up, talked, you name it, he did it. Finally not able to take it any more, I kicked Lee & myself out & gave him the bed to himself. I slept about an hour & a 1/2 that night. Scared to be at home with Jack alone the following day, Lee stayed home most of the day with us & his caregiver was here as well. Jack made it an entire year without a violent outburst, his last one was Christmas 2019 right after a seizure. There’s that to be grateful for. None of what we do as parents & caregivers to Jack would be possible without the help & support of family & friends. Mama came to get Ava, but little did I know she was having an active angina attack on her way over to our house. I felt so horrible! Lee’s Aunt Vicki & Uncle Chuck came to help support us, & Jake VunCannon came for backup. I can deal with almost anything I have learned, but the one thing I can not deal with is the violence from Jack because I have learned first hand just how threatening & dangerous he is & can be. I get the phone book out & start calling people when I think he’s going to be violent if the opportunity arises for calls.

I did increase one of Jack’s main Dravet medications & that is always an adjustment to his body & to us. I say to us because the transition on his body affects the way he acts, moves, behaves. This week has been anything but easy. He fidgets constantly, moving from one end of the couch to the other, one room to the other, putting his feet ON not IN your face, doing annoying things, still eating everything. He’s been calling in orders at Number One Diner, La Cabana, demanding for us to take him to the Mexican Hardee’s (that’s La Cabana for the non-locals). Jack’s OCD is at an all time high, he is loosing everything but yet goes nowhere, he’s wanting me to buy him everything under the sun, & he’s been waking up in the middle of the night every single night. We’ve had to put up the coffee pot (Jack was making coffee at all hours of the day/night), my Alexa is hidden (not really sure where, now), the neck massager gone because he wouldn’t leave alone, & so much more. We really have had a stress-ladened week. The good things are he is eating & pooping, the bad thing is everything else! I have to leave my own house just to get some peace & even then it’s not true peace. My time spent away is texting Lee asking about Jack, or Jack calling me, or worrying about whether or not he’ll have a seizure & what will Lee do for backup. It really is a tough situation. We absolutely 1000% could not do it without faith, prayer, & the support of family & friends. Thank you to all that stopped what you were doing & prayed for Jack Sunday. No one was injured & Jack didn’t have to go to the hospital. Please pray with me & Lee that Jack will never have another violent outburst again. I know & believe that God can heal Jack from that affliction. Love & many thanks to you all. 💜💜💜🙏🙏🙏

P.S. Notice all the takeout boxes of food on the counter? This was all ordered from Number One Diner, plus, I was cooking a huge pot of dumplings .

Author: dravetsyndromeblog

44 year old Mama of three kids, wife of a farmer, & business owner. View all posts by dravetsyndromeblog