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.

Nighty, Night everyone 🫶🏼I’ll update all the latest in the morning, Zzzzzz
09/15/2026

Nighty, Night everyone 🫶🏼
I’ll update all the latest in the morning,
Zzzzzz

Baby Hunter has been needing all my attention today,But please know I’m reading everyone’s messages and am truly so touc...
09/13/2026

Baby Hunter has been needing all my attention today,
But please know I’m reading everyone’s messages and am truly so touched & so thankful for your prayers.
Weekends are generally very quiet around here & not a lot of changes are made.
Last night baby Hunter did wake
Up screaming & crying,
He was experiencing a lot of pain
From what seemed like a lot of trapped air, he was having a very challenging time passing it & his little Tummy was very distended.
It took some time & some pain relief,
But baby Hunter was able to get through,
Other than that the night was quiet.
Now due to the constipation,
We didn’t start trailing the feeds yet,
And I think we’re gonna do some just pedialyte tonight for now.
Gonna go give more snuggles
To sweet baby Hunter,
Please continue loving & adding this sweetheart to your prayers as we wait for results & hopefully guidance.
Nighty, night everyone.






Today, ive been waiting to give An update, This really is because I wanted to Share the results from all the biopsies Ta...
09/11/2026

Today, ive been waiting to give
An update,
This really is because I wanted to
Share the results from all the biopsies
Taken, but sadly as of right now,
There are Still no results yet.
That’s why we have a later update,

I’ve been anxiously waiting
All day,
The team all know this too,
But what can we do.

As for baby Hunter,
He’s been getting lots of hugs & snuggles and is comfortable.
Oh and we started a new
( very slow ) feed schedule,
We’re gonna start running feeds
At 10 mls over a few hours and see
How baby Hunter does.
Bummer not to have those results yet,
But that’s the latest.
I’m slowly reading all your amazing messages, so bare with me, just know
I’m truly touched & beyond thankful
For you all, your messages, shares, support, love mean the world.
I ask today to please continue loving & praying for some direction from the biopsies taken,
For comfort,
And healing over baby Hunter as we wait . 🙏🏻
Our nurses here are so caring and
They took this photo for me today.

What an emotional day yesterday 💔And Our night was long here in the PICU too.So many wires, So many tubes, On such a tin...
09/10/2026

What an emotional day yesterday 💔
And Our night was long here in the PICU too.
So many wires,
So many tubes,
On such a tiny little guy,

But Before I get into details,
I really have to truly thank you all for loving & praying us through everything yesterday.
I don’t have all the words that can express truly how much you mean to us,
And to me,
But, Please know, from the bottom of my heart, thank you 🙏🏻 you’re all Amazing .
Here’s the latest ;
So once baby Hunter was wheeled back to me in recovery & the picu,
Baby Hunter has been requiring more oxygen, so that’s really why he’s being watched a little closer, but otherwise he is recovering nicely today,
as we’re waiting for those biopsies taken.
We are hoping by Friday we’ll have some results.
Those biopsies will hopefully be able to give GI a further direction for treatment,
And some answers to baby Hunter aversions & not being able to handle more than a tiny bite of food in his mouth.
So far today, we have had OT,
Child Life, dietitian, GI & the regular teams by baby Hunters room,
plans today are to let him rest,
Which, I’m totally on board.
Gosh he’s such a sweetheart 💗
Today we pray and hope for further direction from these Biopsies taken
and continue healing from yesterday’s procedure.

09/10/2026

Baby Hunters is with me in the PICU 🙏🏻
Sweetheart hasn’t woken up yet
& So many emotions are swirling around tonight. 🙏🏻 keep those prayers going
I’ll update in the morning.

They took him,I rode in the bed with baby Hunter To as far as they would let me, So many surgeons are with him, Omg my h...
09/09/2026

They took him,
I rode in the bed with baby Hunter
To as far as they would let me,
So many surgeons are with him,
Omg my heart tore into a thousand tiny pieces as versed was given
And he still was screaming & scared
As I Handed baby Hunter over to them,
But before they took him,
They kindly took this photo

Please everyone,
Baby Hunter is in with the surgeons now
Now’s the time to pray for everyone in there 🙏🏻
Love you baby Hunter






This has to be a very quick update, ( for now ) As baby Hunter is very upsetAnd needs me.Today has been really hard so f...
09/09/2026

This has to be a very quick update,
( for now )
As baby Hunter is very upset
And needs me.

Today has been really hard so far,
Baby Hunters been ordered to be NPO
Since early this morning
& he just doesn’t understand
Why he can’t have his mamma milk,
He’s still nursing, so he’s so upset about it all, along with all the nurses
Coming in doing this or that to him.

Baby Hunter is scheduled for the big
OR sometime after 2 pm ( our time )
Then will go to the PICU.
please 🙏🏻 please continue
Praying for everything to go smoothly,
For baby Hunters teams to be able to find something that points to treatment,
For grabbing those biopsies without any issues ,
And for baby Hunter to be placed back in my arms and that everything went well 🙏🏻
Dadda is here too,
And his words are “ this is hard “ .
It really has been , sorry baby Hunter 💙💙
We need you all,
Please love & pray for our baby Hunter through all this.

It has been a long day here,So many ins & outs of doctors, nurses, Specialists, ect.Followed by IV attempts And what I m...
09/09/2026

It has been a long day here,
So many ins & outs of doctors, nurses,
Specialists, ect.
Followed by IV attempts
And what I mean about attempts….
Baby boy had a couple infiltrates ( blown IVs ) before we got one going,
But I am very thankful the nurses were
able to grab all 8 vials for labs needed
at the same time.
I played baby Hunters favorite music,
During everything.

- for anyone that doesn’t know, or are new here,
Baby Hunter loves Hawaiian music. 🤗

Anyways, we had sweet Hunter on my lap as the nurses and doctors had to do what they had to do, and I even tried reading him one of his books,
while baby boy kept being brave through it all.
This is hard , I have to say,
“ Hunters “ just so aware of every little poke, and just everything really 😢
I gotta bring out LOTS of toys tomorrow,
As there’s gonna be even more then.
I’m not sure till rounds in the morning of all the plans yet,
But what I do know ;
Orders are in for baby Hunter to be NPO
At midnight, For a couple procedures tomorrow,
Ones an endoscopy, there are other procedures scheduled, but im not gonna find out more till rounds in the morning.
Truly, thank you all so very much for all your love, prayers ( keeping me sane )
Messages, Sharing our journey too
( this is appreciated to, )
our community here is just amazing,
Your the best 💜
I’ll update in the morning,
Please help us love and pray for finding some answers for sweet Hunter.
Nighty, night everyone
Update in the morning






We are all checked in 🙏🏻Once things slow down a bit in here, Ill do a better update then,Sending hugs from baby Hunters ...
09/08/2026

We are all checked in 🙏🏻
Once things slow down a bit in here,
Ill do a better update then,
Sending hugs from baby Hunters room

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