That Clown! 🤡

I’ve said since the show Seinfeld was released, they basically were writing about my life…minus all the sex story’s lol. Before I reveal about the clown, I’ll give y’all a quick update on Jack. I’ve not had the opportunity to blog about Jack in the last few months because he has been doing so good & praise the good Lord he hasn’t given me much material to work with. At one point, I could have written a blog about Jack nearly everyday. He was either getting into computer stuff he didn’t need to know about, tormenting us with terrible behaviors, or sick. We honestly never knew what each day would bring & what kind of torture he would put us through. If you’re new to my blogs, Jack would meet scammers online & they would make him make us buy them gift cards in turn for “love”. No amount of talking to Jack could make him understand what was actually going on. He even told us a girl was moving in with us a few years back & there was nothing we could do about it. Talk about scared! Lee nor myself slept at all that night wondering if someone was going to come to the house. Thankfully, “she” never did! At this point in time, Jack doesn’t really have any interest in his phone any more. This has been a huge blessing to us. His days are spent by the pool, talking on his hamburger phone, planning his birthday that’s coming up in a few weeks, napping, watching TV, & seeing who he can get to deliver him food! Food trucks are all the rage now & our town has a great one, Max’s Millstone BBQ. Jack called Max & asked if someone would bring him a few bottled waters to the house. Now, we have filtered water from our sink, but that was not good enough for Mr. Hugh Hefner as I lovingly refer to Jack! He paid for them upon delivery. Just this week, our local sub/pizza place delivered Jack some chicken wings, french fries & a tea. They don’t do delivery, ever! When I asked Jack how he arranged it, he wouldn’t tell me. Said it was a secret! I was completely shocked when the doorbell rang & a Mama Noi’s representative was at the house. This young man can get anything done! I’m sending him to the White House to straighten out that bunch!

Jack has had Covid. We found out this past week, his only symptom was extreme lethargy & I mean extreme. Mama also had it & my sister. I took Jack to his primary care office earlier this week because I suspected it but knew on Saturday something wasn’t right with him as his eating & drinking slacked off drastically & I could tell by the way he was holding his head something wasn’t right, but I couldn’t bust up in there & say “he’s not holding his head right, so I know he’s sick”, I had to wait for more symptoms to develop & that was through tiredness. I felt like Jack was developing pneumonia again but to my surprise, his lungs looked great. When we got checked in, his blood pressure was very low, he has that issue any way, most Dravet patients do. He was also dehydrated which contributed to even lower numbers. The PA’s were wonderful & whisked Jack to our local ER right away. From there, he got two bags of fluid & a positive Covid swab & he was allowed to go home, but not before we got a tongue lashing about the Covid vaccine. I don’t mind telling anyone that I’m not vaccinated, nor is anyone in our house. If you don’t already know, Jack’s first seizure occurred just four days after his six month immunizations. There is a connection between vaccines & Dravet & even though Jack is a higher risk patient, we still feel the vaccine is not right for him or us at this time. The ER doctor advised me to consult with a geneticist to see if the vaccine would be right for Jack-please! A geneticist couldn’t even discover Dravet Syndrome, so no thank you. The staff at our local hospital was amazing however, this doctor was annoying with his lectures to us. Not only that, he pushed the antiviral Paxlovid on Jack & he couldn’t even have it due to interactions with his seizure medications. When I inquired about the monoclonal antibody infusion, he said they don’t even prescribe that any more or do it. I knew that part of that statement was an outright lie, the part that they don’t do it-they do! On the doctors third time in to deliver the news of a positive Covid result, I declined the Paxlovid & asked again for the antibody infusion & this man raised his voice at me to say “I told you they don’t do it any more”. Now, he better be glad I was too worried about Jack or I would of lost it. I am so sick of medical professionals pushing the vaccine & now this antiviral drug. So many are hung up on these two things & many patients are becoming complacent because they are either too scared to speak up or don’t know of any other treatments. Jack was signed up for an appointment for the infusion when we left, but I didn’t end up taking him because he felt so much better after the fluids. Y’all don’t let people railroad you when you have a hunch that you know better or it doesn’t feel right.

Jack had his feeding tube removed a few weeks ago, which was not ideal. Jack’s appetite waxes & wanes all due to Dravet & medications, but he wanted it out. Being 20 years old & strong as an ox, there was no way we could make him keep it in, this was my resistance in him getting a feeding tube years ago because he’s going to take it out if medical professionals don’t. We simply do the best we can with him & pray for help, daily. Jack’s blood pressure got really low when he had Covid because he wasn’t eating or drinking properly & the feeding tube would of been very beneficial to him at that time. Otherwise, his health has been great & his attitude marvelous.

What we are having an extreme problem with is his sleep. Jack is not sleeping normally…again. Dravet patients have a very hard time getting solid sleep, a lot of times it’s from seizure activity, but in this particular case with Jack, it’s from excitement we think. First, it was the anticipation of watching the fireworks on the 4th, now it is the excitement over his birthday that is August 2, which brings me to the title of this blog That Clown!. Jack wanted to have his birthday at the bowling alley this year, but I talked him out of it with the promise of a clown. I thought this would be a fun, different experience for Jack especially given what he went through last year & into this year. Jack was all for that, very happy about a clown coming to our house, but like with everything else, Jack has gotten so worked up into a frenzy about the clown coming, he has made me hate the thought of celebrating his birthday & the clown, too! I made the unfortunate mistake of telling him who the clown was in which he looked her up on Facebook & started calling her relentlessly. She called me one morning very early 7am & said that Jack had called her all night long & at 5am & asked that I talk with him. I had to tell him if he called “that clown” again, she said she wasn’t coming to his party. If this ain’t a Seinfeld episode, I don’t know what is! The other unfortunate circumstance of this birthday is “that clown” has to come at 10am, he won’t sleep at all that day. While I am thrilled to be able to celebrate Jack’s birthday after the medical issues he has had, I am wanting this day to hurry up & arrive & pass because of the sleep issues he is having worried about “that clown” & that’s exactly what he calls her. He wakes up talking about her & goes to bed talking about her& what gifts he is going to be receiving. Honest to goodness, we have been working on a birthday list since March! This is his current sleep schedule that has ruined my life: Nap from 8pm-11:30pm, sleep from 2am-5am, he comes & wakes me up at 5am & stays up til 9:30am, sleeps from 9:30am-1pm like a freaking log. One may say “just wake him”, there is no waking Jack. When he sleeps, a stick of dynamite can’t rouse him. He sleeps in segments now & so do I. I am beyond sick of it. It’s so incredibly hard to do life sleeping on such short timeframes day in & day out. Jack has zero understanding of this & it seems like the more I talk to him about it, the worse he gets.

Sleeping during awake hours!

And while life is tough right now without adequate sleep, I do know how fortunate we are to have Jack, but it’s really hard to deal with & trying to process all these Dixie Lee pea orders, too can be nerve wracking! 🤣🤣🤣 If you’re not from our area, Dixie Lee peas are the hottest ticket in town, we even have a whole waitlist for them that is pages long! If any of you have any leads on a clown that would be available August 2 anytime later than 10am, please let me know…there might be Dixie Lee peas in the deal for you! 🤡🤡🤡

Author: dravetsyndromeblog

44 year old Mama of three kids, wife of a farmer, & business owner.

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