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Team Justin

Justin, born in 1998, suffers from a rare severe seizure disease, causing many delays! Follow us!!! Heyyy!!! My name is Justin or as my friends call me "Ju Man".
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The most important thing I want you know about me is that I loooovvvveee to give big hugs and hold your hand!!! It is my way of saying Heyyy!!! I had my first grand mal seizure at 4 months old on 6/10/1998. Since then, I have had numerous seizures which along with a multitude of medication cocktails, brain surgery and a few other anti-seizure methods have delayed my progress. Currently, I have at least 5 different of seizures and take 11 medications, 24 pills a day. I can walk but have to use a wheelchair in the community because of my uncontrollable seizures plus I love to run away from Mommy T. I am nonverbal, but make a lot of "B" sounds and say "wee" and have an awesome little laugh!! I loved to "talk" to you too!! Just mimic my sounds and we will be talking up a storm!! I am also Autistic, which means I have meltdowns that I'm unable to explain to Mommy T. I will hit the floor, a door or anything with my hands or head. And I express "no" by slapping the top of my left hand with my right hand. Mommy T. is really good at redirecting my meltdowns, most of the times it works :)

Unfortunately, another huge obstacle in my life, is that I am completely incontinence. I have to wear pull up diapers and "rubber" pants always. I do not have the brain ability to know/care that I am wet or worse. Poor Mommy T., she keeps trying to keep me dry but I usually leak twice a day and then she has more laundry to do. But I do help her put the clothes in the washer and into the dryer. And unloading the dishwasher is my favorite chore!! Handing Mommy T. one thing at time, one utensil at a time!! (thank you Autism!) But, she tells me it saves her back from bending over plus she loves it when I help her with any chores! Even though, it will take 2x longer to do it :)

Thank you for following !! Look for more daily details about me on my page!! There is more Mommy T. and I want to share with you!! Much hugs!! Ju Man
Written by Mommy T. Theresa

08/26/2023

Happy Saturday!!!
I took advantage of Ju Man playing in the tub, and buzzed his head and shaved his beard!! I had a huge mess to clean up, but he didn’t fight me as much because he was playing in the water. I still have to do some trimming but for now he doesn’t look shaggy and I can really see his sweet smile!!

Y’all have a great day and stay cool!!! We’ve been inside since the heat is over 90, hopefully next week we can get out.

As always, thank you for your continued prayers and support of my Ju Man!!!

Big 🤗,
Mommy T & Ju Man

07/29/2023

Happy Saturday from our man of leisure!!! He’s chilling waiting on his 2nd helping of scrambled eggs. I asked him to smile and I got this goofy look!!!
Y’all have a great day!!! Stay cool!!!

As always, thank you for your continued prayers!!!
Big 🤗,
Mommy T. & Ju Man

07/26/2023

Good morning, TJers!!! Sorry I haven’t updated in awhile. We’ve been on a roller coaster, me emotionally and Ju Man physically. The gran mal seizures have increased, therefore, Dr. Taylor went ahead an increased one of his seizure meds. The game plan was to wait until we got the genetic test results before making any medication changes. Welp, Ju Man had other plans 😂!!! Seriously, I’m ticking all the boxes to prevent seizures, but this disease has a mind of its own. And that’s when I question myself, did I let him swing too long, was the bath water too cold or too hot, the revving up of a loud car, did he eat/drink too much or too little… or my favorite: did he get too excited because????
I will say Ju Man is having fewer meltdowns and he’s responding well to prompts in his daily living skills.
I will keep you updated on the medicine change. I’m not very hopeful, nature of living this rodeo for 25 years. His brain will calm down once the increase takes effect, then wham!!! The seizures will increase more. That’s called the “honeymoon period”. And if we do see an improvement with the seizure decrease then we’ll probably increase the Med more. It’s all a balancing act!!! This medicine world is a vicious cycle!!! All I can do is pray for my Ju Man, pray for guidance of Dr. Taylor and team and pray that I am making the best decisions for Justin.

As always, thank you for your continued prayers and support!!!
Big 🤗,
Mommy T & Ju Man

07/24/2023

Be kind, all minds are built differently! 💚💜🧠

07/16/2023

🩵🩵🩵

07/16/2023

I told him to smile!!! This is huge!!!!!!!!!
Whenever, I pull out my phone to take a picture he will bury his head in my shoulder. Y’all celebrate with me!!! Besides, you can’t help but laugh when you look at that huge smile!!!

And yes, he still wearing his Hawaiian shirt. He’s had it on since Friday and won’t take it off. He’s like Mommy “you shaved me and now that I’m cooler I gotta look the part.” 😂

Have a great Sunday!!!

As always, thank you for your continued support and prayers for my Ju Man!!!

Big 🤗,
Mommy T. & Ju Man

07/16/2023

Happy Sunday, TJers!!! 🌞

Update on the genetic test:
Medicaid paid for the test!!! God is so good!!!

Now we wait. The results should be in the end of September. We have an appointment scheduled with his epilepsy dr on 9/25 to discuss the results. I will get a copy too (not that I will understand it 😂). But it’ll be nice to have my own copy without having to ask for it.

Y’all showed out on the T-shirt fundraiser!!! 🙏 The total amount raised was $408!!! And we sold 16 shirts going to 6 different states!!! That’s what I love, friends, y’all publicly showing support for MeBoyyy!!!

With all that being said, I have not taken these huge blessings lightly. I started this fundraiser so the funds would be in place, if needed, to pay for the test. Several years ago, Medicaid wouldn’t even consider it. I just wanted all of my bases covered. Therefore, the monies received is being used to pay for Justin’s pull up type diapers, rubber pants to help prevent leaks, rubber gloves for me, adult wipes, and other incontinence needs. This is a huge monthly expense for me. And your generosity lifted a huge burden off of me!!! I am truly grateful!!!

As always, thank you for your continued support, love and prayers for my Ju Man!!!

Big 🤗,
Mommy T.

07/15/2023

Good Morning 🌞!!! Someone woke up happy and playful this morning!!! We’re making faces at each other, one of our special ways to communicate!!!
Thank you for your prayers yesterday. And the support through your comments and likes. It was a day for the books!!! The last time he was seizing that bad was in January, which resulted in 2 ER trips. I did call 911 for a vitals check. The EMT said his blood pressure and pulse ox was low, due to meds and seizures but he wasn’t having problems breathing. Only in a deep sleep. Before calling 911, I checked his vitals but because they were low I wanted another opinion. I knew he was in a deep sleep and I was glad because that’s usually signals the end of the gran mal type.

Any TJer’s with sharp eyes??? 🤓 Ju Man got a shave!!! He hates to have his haircut and especially his beard. One of the advantages of yesterday, I was able to shave him without any fight!!! He’s looks so young now!!!

Y’all have a great Saturday and stay hydrated and cool!!!

As always, thank you for your prayers and support of my Ju Man!!!

Big 🤗,
Mommy T.

07/14/2023

11:00am GA time update:
Ju Man is sleeping, but still having a lot of twitching. Such as, his only right eyebrow goes up and down or one finger.

Big Brother, Jacob, works down the road and was able to leave and give Justin his meds.

I have a call into his epilepsy dr, confirming when I can give him another dose of emergency med in case he needs it. Right now, my focus is to keep him from having to go to the ER. Thankfully, it is a nasal spray and very easy to administer!!!

As always, thank you for your prayers and support of my Ju Man!!!

Big 🤗,
Mommy T.

07/14/2023

Good morning, please send prayers for Ju Man today. He started having small seizures yesterday, so I made him wear his helmet. This morning, he’s not any better and I’ve already given him the rescue med. We’re sitting here this morning, with our favorite things, waiting and watching. I can’t hold his hand when he’s in this state. His muscles are extremely tight and if we’re holding hands & he has a seizure then I could get hurt. That happened yesterday when the big seizure monster visited. That’s when my Mommy T. ❤️ hurts. I have to think about my safety first. If I get hurt then I can’t properly take care of him. It’s the same way going up and down the stairs. I make sure, if he was to fall, then he doesn’t take me down with him.
As always, thank you for your continued prayers and support of my Ju Man!!!
Big 🤗,
Mommy T.

07/11/2023

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