Iāve said since the show Seinfeld was released, they basically were writing about my lifeā¦minus all the sex storyās lol. Before I reveal about the clown, Iāll give yāall a quick update on Jack. Iāve 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 hasnāt 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 didnāt 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 youāre new to my blogs, Jack would meet scammers online & they would make him make us buy them gift cards in turn for āloveā. 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, āsheā never did! At this point in time, Jack doesnāt 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 thatās 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, Maxās 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 donāt do delivery, ever! When I asked Jack how he arranged it, he wouldnāt tell me. Said it was a secret! I was completely shocked when the doorbell rang & a Mama Noiās representative was at the house. This young man can get anything done! Iām 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 wasnāt right with him as his eating & drinking slacked off drastically & I could tell by the way he was holding his head something wasnāt right, but I couldnāt bust up in there & say āheās not holding his head right, so I know heās sickā, 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 PAās 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 donāt mind telling anyone that Iām not vaccinated, nor is anyone in our house. If you donāt already know, Jackās 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 couldnāt 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 couldnāt even have it due to interactions with his seizure medications. When I inquired about the monoclonal antibody infusion, he said they donāt even prescribe that any more or do it. I knew that part of that statement was an outright lie, the part that they donāt 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 āI told you they donāt do it any moreā. 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 donāt know of any other treatments. Jack was signed up for an appointment for the infusion when we left, but I didnāt end up taking him because he felt so much better after the fluids. Yāall donāt let people railroad you when you have a hunch that you know better or it doesnāt feel right.
Jack had his feeding tube removed a few weeks ago, which was not ideal. Jackās 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 heās going to take it out if medical professionals donāt. We simply do the best we can with him & pray for help, daily. Jackās blood pressure got really low when he had Covid because he wasnāt 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 normallyā¦again. Dravet patients have a very hard time getting solid sleep, a lot of times itās from seizure activity, but in this particular case with Jack, itās 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 āthat clownā again, she said she wasnāt coming to his party. If this aināt a Seinfeld episode, I donāt know what is! The other unfortunate circumstance of this birthday is āthat clownā has to come at 10am, he wonāt sleep at all that day. While I am thrilled to be able to celebrate Jackās 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 āthat clownā & thatās 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 ājust wake himā, there is no waking Jack. When he sleeps, a stick of dynamite canāt rouse him. He sleeps in segments now & so do I. I am beyond sick of it. Itās 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.

And while life is tough right now without adequate sleep, I do know how fortunate we are to have Jack, but itās really hard to deal with & trying to process all these Dixie Lee pea orders, too can be nerve wracking! š¤£š¤£š¤£ If youāre 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 knowā¦there might be Dixie Lee peas in the deal for you! š¤”š¤”š¤”