Toby’s Journey

Toby’s Journey A special little boy named Toby, Living with so many Unique Complicated Medical Conditions Hello Mr.

Toby is a seven year old little boy diagnosed and living with a very rare syndrome called Christianson Syndrome along with some other unknown issues/ Syndrome that is not diagnosed, his syndrome primarily affects his nervous system making him unable to speak and problems with balance and coordination also making it nearly impossible to walk, but I still pray Toby will one day ( he’s always trying)

Little Toby also lives with a multi Seizures disorder, Hypotonia throughout his body, severe GI complications and is unable to eat by mouth (NPO) I was told by the hospital early on that Toby wasn’t gonna have long, but he keeps proving otherwise and just continues being amazing and battling on. I decided to share & start a page for sweet Toby to keep family & friends updated and in hopes to build this special boys prayer army as he is going through all of what he does and help spread love and awareness for all, we keep learning every day. Please like & follow Tobys Journey and come join us as we defy odds & learn along this journey of life.

Here’s the latest with us, ( So sorry it’s gonna have to be a quick version till later )I was given an opportunity just ...
09/01/2026

Here’s the latest with us,
( So sorry it’s gonna have to be a quick version till later )
I was given an opportunity just now to close my eyes for a short while and I gotta take it whenever I can.
Toby is scheduled in IR for another procedure tomorrow afternoon,
If everything goes smoothly,
We should be able to go home,

Baby Hunter update ; after speaking with his teams over the last few days,
GI wants to Admit baby boy again
& real soon.
I promise to update more in a bit,
After this momma closes her eyes finally for a short while zzzzzz
Love you all
Below 👇 baby Hunter being brave with another dressing change.

Nighty, night everyone!Baby Hunters all cuddled up on me, Looking so cute.Busy day tomorrow,Hopefully we’ll be hearing r...
08/31/2026

Nighty, night everyone!
Baby Hunters all cuddled up on me,
Looking so cute.
Busy day tomorrow,
Hopefully we’ll be hearing results from Toby’s heart work up tomorrow too.
Your love & prayers for our family
means the world, truly thank you everyone 🙏🏻
You are amazing & thank you for keeping this mamma going to,
We still have more miracles to witness.
Sweet dreams everyone 💤

Toby’s back with me 🫶🏼We had snuggles & therapy pups ( that he has grown up with ) Come specially to snuggle, while My p...
08/29/2026

Toby’s back with me 🫶🏼
We had snuggles & therapy pups
( that he has grown up with )
Come specially to snuggle, while
My phone charged.
Doctors were able to get everything they needed, 🙌
I even got to sit with Toby for the first part, holding his hand.

So here’s the latest ;
The teams are looking at all avenues at the moment to try take some control of his intractable epilepsy,
As we’re doing so, for a little bit now,
We are having to treat a lot of side effects from treatments sadly.
Toby’s Heart, is actually one of his strongest parts about Toby.
The next actions the teams are exploring CANNOT be explored unless Toby has a strong heart at baseline to begin treatment.
This particular treatment has effects to one’s heart valves,
It all sounds scary,
But this is where we are for Toby now.
The teams need to stop his bigger
“ damaging “ type seizures,
Anyways, we really are praying that
Toby’s heart will be a good candidate for this treatment 🙏🏻
And that his heart stays strong &
Toby can go through this.
he will be closely followed by cardiology if he is cleared to start and will be monitored.
Toby was actually a bit scared at first,
The nurse leaned over and turned up one of the monitors and let him listen to his own heart beating while holding my hand, awe
He calmed down & you could see,
In his face he understood,
Giving that amazing little smile.
It has been a long week,
Just yesterday baby Hunter,
had 4 therapy sessions followed by
GI clinic & dressing change,
Oh those dressing changes are so traumatizing.
That’s the latest, today has wiped us out, but I wanted to let everyone know
Toby’s back with me and sending hugs to you all.
Please continue adding these sweethearts to your amazing love & prayers,
Specially pray for Toby’s heart to be a good candidate for treatment &
For these seizures to get under control,
Love you all, I don’t know what I would do without you all by are side,
Nighty night.
Below 👇 me holding his hand & listening to his heart





Toby’s all checked in for his heart workup, Ill explain in more details when Toby comes out & is back in my arms🫶🏼🙏🏻
08/28/2026

Toby’s all checked in for his heart workup,
Ill explain in more details when Toby comes out & is back in my arms🫶🏼🙏🏻

Somehow it’s already Monday & I haven’t managed to have a moment for a much needed update yet,But let me just say, It wa...
08/24/2026

Somehow it’s already Monday
& I haven’t managed to have a moment for a much needed update yet,
But let me just say,
It was for a good reason at least.
I finally had some time.
Some Time….
Some Time to spend with just
“ Toby “.
I’ve bottled up a lot of guilt inside,
Not having the time we used to have
With each other,
( since having Baby Hunter really )

For everyone that’s followed us for a bit,
Then you know
How close I was to Toby,
I wouldn’t leave his hospital room,
At all……
As Month after month
Would go by,
We did everything together,
Right there in his bed…..
I would talk to him through all the scary
Needles, dressing changes,
Medications or even if he was not awake or very ill,
Or a Rapid response was called,
I would still be right there, next to him,
talking to him as the doctors or nurses came in & outta the room.
Anyways, I had such a nice few hours
Of just
“ me & Toby Toes “
time yesterday,
It was truly amazing,
I think it’s what both our hearts needed!

On top of everything,
There have just been ALOT of changes
Recently,
Toby’s home nurse has moved,
So training new nurses has been challenging & new,
Tobys hospital teacher has retired,
So We are still waiting for a new face to start,
One of Toby’s real close friends at the Ronald Mc Donald house has moved.
So lots of changes all at the same time.
Anyways…….
I did all the dressing changes &
Mepilex pads ect for our Toby boy
all on my own &
It just felt great,
doing these simple things,
Idk, making Toby feel happy and clean,
And well taken care of,
It’s hard to put into words,
Toby’s precious smile,
Gosh, does his
“ Smile “
speak a thousand words.
As we spent our time together,
Toby just kept smiling, 💜
Truly are moments yesterday,
will be engraved in my heart forever.

Now for the purposes of not making this read too long, I’ll do a separate update of Toby’s latest Neurology stuff separately so we don’t get to lost and focus on yesterday s time together instead,
As it really was magical ( to me )
And this Neuro stuff is really ALOT,
And scary.
Below my baby boy Toby and
His smiles, that speak a thousand words.
Couldn’t do these Miracles without you all continuing to love & pray for these boys, my words will never be enough, to how truly blessed and grateful we are for you all, happy Monday and off we go.





Ok !Look at all those calories baby boy is So interested in this morning 🫶🏼And the skill he’s developing in the process....
08/22/2026

Ok !
Look at all those calories baby boy is
So interested in this morning 🫶🏼
And the skill he’s developing in the process.
The other day, I came up with
this,
I took baby Hunters “ Juice bear “
Learning straw & lid and put it as a lid on a yogurt drink,
And walla 🙌
I had know idea if it would work or if baby boy would show any interest,
But bam…….
This morning he’s taking sips.
We will definitely be showing the feeding therapists at the hospital this Tuesday.
Anyone that has feeding aversions or difficulties, maybe check this out.
Anyways…….
It’s been a another very busy week and there is a lot to update,
Which I plan to do this weekend,
Toby Toes has Cardiology work ups at the big hospital scheduled for next week, along with some new medications his whole team are doing one more meeting this Monday,
before we go ahead, the “ Whole “ team needs to make sure This will be safe for him before moving forward for his seizure control.
Oh & Toby boy had a lot of great cuddles with his beloved therapy pups he’s grown up with at CHLA yesterday, which you can tell was “ so needed “ 💜❤️
Good morning everyone, we treasure you all dearly, you’re the best.
Update in a little bit,
Just had to share this quickly before another day goes by.





Yesterday was traumatizing,Baby Hunter had to have his tube changed, But what made it traumatic, Was the nurses were uns...
08/19/2026

Yesterday was traumatizing,
Baby Hunter had to have his tube changed,
But what made it traumatic,
Was the nurses were unsuccessful with placement,
When testing placement, it wasn’t testing stomach bile.
Poor sweetheart,
After being brave through all his tears, nurses had to re access everything.
Doctor came & Asked what I wanted to do,
Options are ;
Go down to ex ray or take off all the dressing & try going a bit further down.

I hated both options, but I choose option two, to take off all the dressing & go further with his tube,
I thought let’s try to skip more radiation if we can.
If that didn’t work we’ll go to ex ray to check placement ect.
We’ll……….. guess what,
Nurses took all the dressing off again,
Went further with the tube,
No success,
But then as we were going back to original 24 “ placement,
I asked “ let’s test here again “
And yay
We had bile,
Tube was in place !!!!!!!!!!!
& We managed to skip more radiation too.
( The Tube must of coiled up inside a bit, We all think. )
Baby Hunter, with his Hawaiian music playing & his stuffies sitting around him,
Finally was passed to my arms for a big mama hug.
One of the nurses brought in
“ Mickey Mouse “ stickers….
Mickey Mouse is his favorite these days ❤️
And Tube was placed and done on his other side of his face now.
Big brother Toby & his nurse
Came in and Toby gave him smiles.
Baby boy was so upset for some time yesterday as we carried on through the hospital stuff,
Anyways off to another busy day today.
Truly thank you for continuing to pray for these sweethearts,
It’s a tough journey indeed,
We love you all,
And off we go.

Good Morning Everyone 🫶🏼As we’re getting ready for the busy, busy of the week, I caught baby Hunter trying his hardest,E...
08/17/2026

Good Morning Everyone 🫶🏼
As we’re getting ready for the busy, busy of the week,
I caught baby Hunter trying his hardest,
Exploring this strawberry,
Every morning ( wherever baby boy is )
We introduce fun very soft treats,
For anyone new here ; baby Hunter isn’t able to handle food consistency other than Very blended yogurt type consistency & only able to take about 1 to 2 bites in of actual food.
( at the moment )
The doctors are still exploring why the aversion and the inabilities.
In the meantime, since discharge, baby Hunter has x2 a week of intense feeding therapy clinics.
Anyways, yay look at baby boy & this strawberry,
“ idk I’m loving the strawberry all over the face look baby Hunter “ lol.
I thought this would be a good “ Jumpstart “ to the day kinda picture,
And off we go!

Ok so somehow we managed To do “ a beach day “Yup, you read that right!We saw an opportunity today, And before any chaos...
08/16/2026

Ok so somehow we managed
To do “ a beach day “
Yup, you read that right!
We saw an opportunity today,
And before any chaos started up,
We just loaded everything
“ Tubes, Meds and all “
And off we went.
These boys had a blast,
When we first got there,
After putting a blanket down,
Baby Hunter crawled to the edge of the blanket, leaned forward, to try touch the sand around.
Omg, His face!
he was so unsure of it all,
But let me share with you all now,
By the time we left,
Baby Hunter had no fear or hesitation of anything AT ALL
and throughly used his crawling skills everywhere after he figured out the feel of the sand.

Now Toby boy, his demeanor has been a bit off & tired the last week,
He played in the shade though
His way,
Observing everything,
I even got to have him lay on my lap for a bit looking at the waves,
It was so nice to just lay with my hero,

it was cut a little short though because
Baby Hunter was getting really jealous when I sit with big brother 🫶🏼
Dadda was fishing a bit
& We got to catch and release a sting ray he caught.
Sometimes, spontaneous is the way to go I suppose.
Thank you everyone for loving us & praying, times like these are such a blessing, a miracle really,
we really do have to just do as many memories as we can,
For Toby Toes especially.
I’m getting these sweethearts ready for bed now, gotta do a dressing change, meds ready and both feeds running.
But Wanted to hop on here and share our miracle day with you all.
Nighty night everyone 💜
You’re the best.

https://gofund.me/9d5e241b0

Another GI Clinic today at the hospital.Both boys have a lot going on & baby might be going inpatient again, But these b...
08/13/2026

Another GI Clinic today at the hospital.

Both boys have a lot going on & baby might be going inpatient again,
But these boys still were giving smiles and showing us all their super powers.
Nurses did a quick dressing change
and now were off to more therapies.
( Toby was moving too quick for any pictures today )
Keep adding these boys to your prayers, as we continue on this week, you all are amazing &
Couldn’t do this all without our amazing community here.
Love you all and off we go.

https://gofund.me/9d5e241b0




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