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Captain Jett

@jettpacked

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followers

97

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Welcome aboard Flight FOXG1 with Taylor Airlines. Please fasten your seatbelts and prepare for takeoff. Thanks for joining Jett’s journey. ✈️🦊

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Hi everyone! 👋🏼

My name is Jett. I was born with a rare genetic chromosomal deletion disorder called FoxG1 syndrome. I'm missing half of my 14th chromosome. The first couple months of my life were really really hard and many events led me to where I am today.

Here are some things about me: I know Jesus loves me so much, I'm very happy and calm when I have my meds - they help me a lot, I get all my yummy milk and food from an NG tube (soon to be G tube), I love to cuddle and contact nap, I love playing on my play mat and being outside, my big brother Cash loves me a lot and is always so happy to help calm me down when I'm upset, and I'm in the business of defying all odds stacked against me with my diagnosis - so watch out world! 👊🏼

Some challenges I might face down the road in my life are: severe global developmental delay, not being able to sit on my own or walk, not being able to eat on my own, my muscles are really tight so I may develop cerebral palsy, and maybe have seizures. But hey, like I said - I'm gonna prove them wrong! I'm determined to live a mighty life if my body will let me. 💪🏼

Here's what I'm doing to help give me the best shot at a good life - seeing all my specialists and doing lots of scans to help me get the best care, getting lots of exercise through therapies (occupational, physical, feeding/speech), and trying as many natural things as possible because I'm a 1 in a million, they still don't know a lot about my condition. 😊

Thank you for being on this journey with me! My hope is that you can see how awesome my Jesus is, through all the miracles - big & small - He is going to work in my life.
Ready, Jett, GO! 🚀 by @jettpacked

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5 months ago

Boston update !!!
Don't miss the end 🫶🏼🫶🏼

Xoxo,
Captain Jett by @jettpacked

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11 days ago

Update!!! ✨💙💪🏼☀️
I am 6 months old already! by @jettpacked

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3 months ago

Today is National ACC day!
Agenesis of the corpus callosum is the absence of the band of tissues that connect the two hemispheres of the brain, and it is one of the big parts of FoxG1.
It falls on July 2nd because it is the exact midway point of the year and people often celebrate by standing on bridges symbolizing the absence of the "superhighway" of the brain to raise awareness!

#ACCAwareness #livingwithACC #foxg1syndrome
#bridgethegap #dumbo by @jettpacked

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3 months ago

Last weeks flight log 🛩️

Lots of smiles, play time, all of my therapies, two follow up appointments, and ended with snuggles with my mama. 🥰 by @jettpacked

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4 months ago

This is your captain speaking:

I've been a little MIA lately. I have had a harder couple of days, but I've also had some sunshine moments and this was one of them! I'm loving my bouncer lately and new toy 🤟🏼😀✨☀️ by @jettpacked

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4 months ago

Thanks mom for keeping my belly full 🤟🏼

#tubefeeding #medicallycomplex #rarediseases #fox #medicalmom by @jettpacked

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4 months ago

I broke free!!!

My mom & dad are taking me home today! I am doing so much better. I am back on full formula feeds at a continuous rate right now for a little bit longer until my belly is ready for bolus feeds, and even then; low and slow is the name of the game for me. I'm in no rush, I will get back to where I need to be eventually. My new med is helping me a lot too!

Now to stay healthy enough to avoid the hospital for a while. This was my 3rd admission in 2 months, and 2 ER visits within 5 days. Phew!

Do you think I can do it??

P.S. my big brother came to visit today & it made me so happy!! by @jettpacked

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4 months ago

Current Jetty boy update! 🫶🏼

#foxg1 #rarediseases #microcephaly #medicalmom #rarelife by @jettpacked

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5 months ago

Matching my big bro!! 🩵🏈

Heading into a big week - Thank you Jesus for watching over us always. He is good!! by @jettpacked

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5 months ago