Lifes A Journey

Lifes A Journey Journey was born July 10,2019! She was born with an extra chromosome which makes her extra special!!!

This page is to keep everyone posted about how shes doing and sharing special moments with the ones we love!

This girl cracks me up!She's having pizza withdrawals.She just found her big brother's boxers that are covered in slices...
04/19/2026

This girl cracks me up!

She's having pizza withdrawals.
She just found her big brother's boxers that are covered in slices of pizza.

She came running to me saying "mmmm" and rubbing her belly!

She cracks me up!
She's so funny and smart!
Even when she can't find the words, she finds a way, to let you know exactly what she wants!

Picking Donuts 🍩 with her sister this morning! So many options!
04/17/2026

Picking Donuts 🍩 with her sister this morning!

So many options!

Tell me your experience.....I know children with down syndrome, their immune systems normally just suck. Right!?! But we...
04/10/2026

Tell me your experience.....

I know children with down syndrome, their immune systems normally just suck.
Right!?!

But we also know that each of our children are their own person.
So here is my issue.

The first year of Journeys life was kinda hard.....
Actually it was the hardest year yet with her!

That second year she got scalded skin syndrome but after she healed from that, it seemed her immune system started to get stronger!

Her 2nd year of life was during Cvid and we actually were able to keep from getting that until after the pandemic!
And after that we mostly just fight off the normal viruses.

But the last year or two we seem to be reverting back to square one!!
We now are starting to see spots that resemble the spots she got before she got staph.....I have the medicine to stay on top of it so I'm not worried about that.
She's had bouts of petechia.
Way too many sicknesses this year!
At one point n time she fought off some weird hive rash that I believe was her immune system going haywire due to a virus.

The last time her blood was checked her immune system was low!
She also has a rash around her mouth that the teachers thought was hand foot n mouth but the nurse didn't believe that's what it was!

An urgent care doctor sent us to hemotology/oncology but they sent us back to P*P without even seeing her or asking any questions.

I drove her 3 hours and they didn't help much, after receiving her records either and now I'm just trying to decide where to go from here!

I wanted a piece of chocolate 🍫 She does not like to share 🤣I took a piece anyways! I bought it and she needs to learn t...
04/02/2026

I wanted a piece of chocolate 🍫

She does not like to share 🤣
I took a piece anyways!
I bought it and she needs to learn to share, with her friends and her momma!

She was terrified of the tent we stayed in once the lights went off!
She hunkered down in a corner and was shaking!

I gave her paps 🔦 we brought,
She climbed in bed with it.
And it was on ALL night long 🤷🏼‍♀️

Whatever keeps the princess happy 🤣😍
When she's happy, we're all happy!
Unless it's chocolate.... Then I'm taking a piece wether she's happy about it or not!

03/15/2026

Mornings used to be her favorite time of day!

I don't know what happened but now she likes to stay up all night 🥳
And sleep in, in the AM. 💤

Here's a little update on my little Rae of sunshine 🌞

She's recovering well from the Flu, better than her brother!
He still hasn't regained his energy!

Her behavior has really done a complete 180 from a few months ago!

I have been encouraging her to use her words more when she gets upset.

We can't help, if we don't know what is wrong!
I also have been getting onto her brothers and sister for not listening to her, when she tries SO hard to communicate with them!
(It frankly, pi$$3$ me off)

But I believe because using her words and standing up for herself at home is working, they are seeing this change at school as well with her p*ers!

The school sent a note home the other day ecstatic that Journey went p*e on the potty!!!

So apparently she's been tricking them and pretending like she doesn't know how!

She absolutely does, she just isn't consistent!

So I snitched on her and they are going to start encouraging her more to go!
(I thought I had mentioned this, but oops, must have forgot)

She seen ENT a couple weeks ago and everything there looked good.
She seen audiology directly after.
She had some hearing loss in her left ear, but we're hopeful that is from fluid and it will look better next time.

We have a sleep study in April and a follow up appointment scheduled for after that, where we will check her ears once again!

I can't wait for this sleep study, I have noticed her pauses in breathing are happening more often and lasting longer.... She was on the couch the other night n stopped breathing and I almost woke her up but at the last second she gasp for air!

It scared me!

We were hopeful that removing her adnoids and tonsils would help.
But it's not looking good there!

She has an appointment scheduled for glasses and we are still working on that "prescription" for her braces!
But once she's through all of this she will officially be caught up!

I'm sure we will get multiple appointments, from each of these appointments 😂😜
But we're on the right track!

Working on getting this girl back on track!We started melatonin again....judge if you must but her behaviors have improv...
03/05/2026

Working on getting this girl back on track!

We started melatonin again....judge if you must but her behaviors have improved, even school has noticed drastic changes!

I also think once again things are calming down and so is her little nervous system.
She may not be able to talk but she is 100% aware!

So our first appointment was with ENT.
If you could have seen how well she did.
He wanted to clean out her ears and look in them with the camera.....
She hopped up there.
Laid down, laid still.....had a pouty face!
But flipped when asked and got the award of best patient of the day!!!
The doc was so impressed!

She went in for a hearing test directly after!
It wasn't scheduled but they fit us right in.
Jax was with us so she had to go in by herself!
She did so good!!!

She didn't do the best on the hearing test and has some mild hearing loss.....
But we're praying that's just fluid.
We're gonna get her in for a sleep study and then hopefully back in with ENT within 3-6 months to check her out again and go from there!

There's also a mystery ENT appointment with a mystery doctor scheduled for tomorrow lol
So Ill be figuring that out today as well 🤦🏼‍♀️

**The picture is how Journey Rae, my Rae of sunshine, feels about all these sicknesses and everyone being sick!

Stay healthy and have a blessed day!

01/31/2026

Journey usually goes a lot faster than this.
Her but barely touches the stairs.
She has no fear!

The dog kept stopping her, she couldn't let her get her toy!

Don't mind the pile of blankets at the bottom of the stairs!
I was trying to block the cold air!
My heat runs constantly in this cold.

Good morning world 🌞Journey hopes your Saturday is lazy. Your belly is full. Your toes are warm.And your heart is happy!...
01/31/2026

Good morning world 🌞

Journey hopes your Saturday is lazy.
Your belly is full.
Your toes are warm.
And your heart is happy!!

Have a blessed day, for everyday life is a gift!

Did you know that people with Down syndrome carry a "genetic shield"? 🧬I wanted to share a fascinating fact that many pe...
01/29/2026

Did you know that people with Down syndrome carry a "genetic shield"? 🧬
I wanted to share a fascinating fact that many people don't know!

While having an extra copy of the 21st chromosome brings unique challenges, it also brings some incredible "superpowers."

Researchers have discovered that people with Down syndrome have a significantly lower risk of developing solid tumors (like breast, lung, or colon cancer).

How does it work?
Because of that extra chromosome, their bodies produce more of a specific protein that acts like a "brake system."
It actually stops tumors from growing the blood vessels they need to survive.

Why this matters:
It shows that every life—and every genetic difference—has immense value.

Scientists are studying this "shield" right now to develop new cancer treatments for everyone.

It’s a reminder that what makes us different can also be what makes us extraordinary!

Let’s spread awareness and celebrate the amazing contributions the Down syndrome community makes to our world and to science. 💙💛

01/29/2026

She may not love to brush her hair ....

But her teeth are a whole other story!!!!
She will brush her teeth all by herself.
Multiple times a day.

Big girl vibes!

But I asked to brush her hair and she took off running! 🏃‍♀️💨
She was gone

01/06/2026

This is how she felt about giving me kisses this morning!

I never got one.
Not even when she got on The bus 🎒

That's okay, the love I get after she misses me all day makes up for it!!!
She can not wait to get off the bus in the evening and come running to me!

It's my favorite part of the day!
💙💛🩷💙💛🩷💙💛🩷

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Cincinnati, OH

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