What a trying past few days! Jack has been doing so well, so well in fact that we got way too comfortable with how well he was doing. How could we not! After the several years of nothing but severe behavior & medical issues, we honestly felt like we were on an extended vacation with a tremendous hangover the next day! Why a hangover, because Jack has not slept well since he’s been home from the hospital in March. At best, I get three or four hours of straight, undisturbed sleep, after that, I’m lucky to get two hours & that included about 25 interruptions from Jack. Jack has never had any concept of personal space, other people’s needs, or time. If he goes to sleep at 2am, he thinks it’s perfectly fine to come jump on my bed while I’m asleep at 6am or carry-on in the kitchen trying to find something to eat after he’s only slept a few hours. It’s been very difficult keeping up with a job & the extreme lack of sleep I’ve had. Lee, Ava, & myself actually had a peace of mind for the first time in all of Ava’s life & years for Lee & I even though I was/am exhausted. I knew I was tired but I guess i was experiencing a natural high from the sheer happiness of not having to worry about Jack’s behavior or seizures that that kept me going. Jack has gotten out more than ever, visited more than ever, & has eaten more than ever & that is not a good thing since being home from the hospital.
Him eating became a point of contention when Jack was in his mid-teens & it’s a side effect of Dravet & the many medications he takes on a daily basis. We would bribe, beg, plead, ride all over our county picking up his food requests only to bring it home to rot in our fridge. This was also the period that the violence was peaking & the smallest thing would set him off. If you’re new to my blogs, Jack was very dangerous when violent & it was extremely scary for us all, even my strong husband. Jack was too much for three people trying to hold him down. In saying this, you will appreciate our elation in being overjoyed that Jack had not been violent since last year & his eating has improved greatly. I can’t tell you the amount of food he eats on a daily now & that has picked up big time over the last few weeks for some reason. He loves the Tostitos Scoops chips & the Tostitos yellow cheese dip. When I say love, I mean love like Pee Wee Herman would say, “do you love cheese dip? Then why don’t you marry it?” Bet you read that in Pee Wee’s voice! Jack is that in love with it. With supply chain issues, as Lee & I head home from work, we often have to stop & get Jack’s food requests. One stop is at the Dollar General hoping to get everything there, but finding out they only have one bag of chips & no dip. Next stop the grocery store, grab two jars of cheese dip & one bag of chips, last of all they had. Final stop & praying they have enough is Family Dollar, they are fully stocked with the yellow cheese so we buy 6-8 at a time. Jack was eating 3 jars a day with about 20 scoops total. It was funny at first, then it wasn’t. We were hoping the fad would die, but to no avail, cheese dip, cheese dip, cheese dip is all we hear. People say “be glad he’s eating” & no one is more thrilled than us, but with Jack, his life has always been this way, there is no happy medium…ever, it goes from one extreme to the other. His daily caloric intake looks like this, 3 jars of cheese dip, a whole frozen pizza, breakfast croissant, 5 hotdogs, then two plates of Mexican. All of this except the latter are processed foods. Anyone who knows me well, will tell you I never, ever eat processed foods, no cookies, crackers, frozen meals, nothing like that so it is very nerve-wracking to me to watch him do this to his body all in one day! It’s nothing but pure chemicals. Coleman & Ava always told people at school & teachers that I only ate organic, it is a characteristic they can’t stand in me! While at Target last week, the conveyor belt looked like I was having a Super Bowl party…for the Carolina Panthers team! He’s so worried about cheese dip that he called Lee one morning at 7:30 & said he was out & needed more. Lee went to our wonderful Family Dollar & bought them out & delivered! This is how deep the cheese dip obsession goes, I was talking to Ava when this was recorded & Jack chimed in: https://youtube.com/shorts/1UDS6ki3T64?feature=share
The effects of Jack’s diet showed up last week. He began having seizures & he’s not had one since March. I knew he was going to seize when he started acting wild & being unruly, that was the first clue. He had his first seizure right after going to bed one night at 1:45am, then woke up from 5:30am-10:45am & had the next one. A few days later, the same pattern repeated similarly, seizure at 4:15am, another one at 7:45am. The last few caused him to be incontinent. Jack sleeps with all kinds of pillows & blankets & thick ones at that. It honest to goodness took me from 11am-3:30pm to wash it all & that includes hanging it all out because it’s so thick & I am organic & all 🤣 thanks to those confounded new washing machines that I hate with a passion (even wrote a blog about it once). There is no sleeping between seizures for me for two reasons, I am worried he’ll have another one & I won’t hear it & I am worried he’ll become violent afterwards like he has so many times before. I have worked myself into a depression with these recent events. I’ve tried to talk to Jack about eating too much dip, even lied to him & told him the doctor called & only wants him to eat two bowls of cheese dip which equates to one jar a day. Today, he abided by that request. I think he’s eating too much & his current meds can’t keep up with the calories he’s ingesting & I also think all those chemicals he is eating may be playing a role in it as well. I am currently waiting for a response from his neurologist (who doesn’t have the best response history) on what medications we can up. I hate to do it, but it is a necessary evil. Those meds have so many side effects from behavior issues to eating disorders.
The tiredness has hit me because I am no longer elated. I’m scared, nervous, anxious, & on edge. I am tired like I have never been, even through his lengthy hospital stay. I just want to cry all the time now due to being tired. It’s a bad feeling. Overwhelming exhaustion makes you make mistakes, stump your toe, spill stuff, bite your lip. I’ve been so ill, too. Especially since I haven’t had any television to watch. Our sorry Directv has been out for five days now. It’s depressing not having the tv on or not being able to have our normal background noise. I feel like we’ve had a hurricane without the hurricane. What I wouldn’t give for a solid nine hours of sleep without interruptions. In closing, I ask that all of Jack’s faithful prayers warriors will lift him up & specifically ask for a calmness to come over Jack’s body, for the seizures to halt, the doctor to reply back to me, & normal sleep hours be restored to Jack’s body. Thank you for reading, caring, & praying! 💜💜💜