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.

Ok, I m gonna share a bit of what’s going on with our Toby Toes for this post.He is going to be admitted again really so...
11/27/2025

Ok, I m gonna share a bit of what’s going on with our Toby Toes for this post.
He is going to be admitted again really soon, so please, please have those wonderful prayers for him & all the teams as they help sweet Toby boy 🙏🏻
This admission to the hospital, will be to gather more information for the Neurosurgeons & to map out more detail for surgery.
Even though I ve seen and helped Toby through so many really bad seizures, 
Im telling you, one can Never just be used to them, my mind, of course focues on all the protocols first & gettinghim stable.
But the worst is how Toby boy must be feeling, going through all that he does,
And all the uncertainties.
Epilepsy team will be changing dosages of his medication
( during the few weeks admission only ) & actually, while nurses carefully get ready with rescue methods, will let Toby go into some of his seizures.
I will be at bedside at all times with baby Hunter.
Baby Hunter will have a whole little set up in part of the room this time, I will be setting up Baby Hunters bassinet,
Ive run this idea by some of the doctors already, they all thought thats a great idea, as im breastfeeding and cant leave Toby’s side.
We are hoping to get out just before Christmas and Tobys birthday( which is Christmas Eve ) but its quiet possible he wont.
Well be decorating his room at the hospital like we always do, and ill put up a tree and making it festive.
Anyways thats how complicated Tobys Epilepsy has become, doctors use the word “ intractable “ to describe it,
so thats the latest,
Please keep Toby Toes in your prayers,
Hes playing right now & happy, as i sit writing this update at least.
We got this somehow 🙏🏻
Good Night Friends .
Below are photo s of current to baby Toby, during some epilepsy moments through the years,


Can you believe it, baby Hunter is 5 Months old today, where has the time gone, I mean I actually, can not imagine this...
11/24/2025

Can you believe it, baby Hunter
is 5 Months old today, where has the time gone,
I mean I actually, can not imagine this journey without you, even though it’s only been 5 months.
So far sweet baby boy, mimics, laughter & baby babble,
Definitely calls and says “ mama “ 🥰
I swear, baby Hunter is sitting well now with assistance .
Learned how to tag team with big brother Toby toes with the night schedule, currently Baby Hunter, takes on the 1 am through to 6 am schedule to be up. Lol 🤪
Definitely mastered his “ Head Control “
Even has rolled for us a couple times now.
Was beyond brave , for his first surgery.
Loves belly time with dada
And really has such the biggest smiles with his bright blue eyes.

Gosh! baby Hunter, you really are a blessing to us all,
And the life your teaching our Toby Toes is so beautiful.
Good Morning everyone 🫶🏼
Below please let these sweethearts help jumpstart your week, like it has mine again.
Now Off to the big hospital for us this morning .

We’ve had another long week,lots of doctors and appointments with sleepless nights, And baby Hunter has seemed to make i...
11/22/2025

We’ve had another long week,
lots of doctors and appointments with sleepless nights, And baby Hunter has seemed to make it a routine now, to tag team with big brother Toby, with the night shift.
My nights with these boys are literally a blur for me, I’m up with big brother Toby Toes, busy with all the stressful care he has till 12:30 am - 1 am ish,
Followed by baby Hunter, starting his day between 1 & 2 am, up feeding, changing outfits, diapers, & just wanting to be “ Wide “ awake, I mean wide awake, sitting in the dark with my phone light on, or watching cartoons while snuggling up with me.
It’s very cute all the snuggles, but I’m so so exhausted, and I’m struggling to keep going.
This week with Toby Toes & his doctor s, We have been trying to get to the bottom of all these UTI s he’s been going through, it’s very complicated, surprise, surprise, with Toby,
he’s got a Neuro, genetic bladder, retention, complicated kidney issues , 
And unfortunately seems to be worse.
This Sunday, doctors should “ hopefully have some results to cultures taken,
also there are some MRIs, Ultrasounds, & a Urology consult happening within the next few days.
Please pray for Toby Toes & for his team to get some answers, so we can treat Mr Toby., thankfully Baby Hunter seems to be healing well. 🙏🏻
Through all this I sit here smiling with these sweethearts, while rubbing my eyes from pure exhaustion , lol 🤪
Good Morning, I hope this post is legible lol, this teams a bit beyond tired.
Below is some of this weeks journey.

Friends!!!!!!! We finally have a photo of these two together 🥰🙏🏻To me, this picture speaks a thousand words in its self...
11/19/2025

Friends!!!!!!! We finally have a photo of these two together 🥰🙏🏻
To me, this picture speaks a thousand words in its self.
Since Big Brother Toby Toes, has been adjusting to yet another big life changing experience, this time though,
this experience has been so far,
Its been so very wonderful for him,
not like all Toby’s life before, living in the hospital, not knowing even if or what tomorrow holds.
I really see Toby understanding & taking in his new brother with love,
I feel when Hunter was first born 4 months ago, he was just so small,
Tobys thinking ; maybe this new baby is just a little doll, a toy even.
But now fast forward a few months, baby Hunter although still very small, ( 11 pounds) small to be exact,
is starting to discover his voice, even mimics us now, like I make noises then baby Hunter does the same.
And For Toby to give eye contact,
omg this is just another blessing within this photo.
for anyone new here, Toby’s epilepsy does not make things like “ eye contact “ very easy or desirable at all to do, it’s very challenging for his cognitive condition, his hypotonia , involuntary movements, ect to do these things,
But here we are, I catch Toby truly trying all the time lately , and this morning ,
Is one of those great moments .
Theres alot of bad, but omg,
witnessing these moments is really such a blessing . “ Miracles are here “ 👣❤️🙏🏻
I could go on and on about this Photo, all the meanings behind it, but bottom line is “ Miracles “. 
Another busy day for us and I know we’re due for another medical update &
I will this weekend after everything.
Hope these lovely blessings jumpstart & inspire your day like it’s done for me.

Ok this is definitely a shareable “ jumpstart “ kinda morning moment!You would never know our Toby Toes goes through as...
11/16/2025

Ok this is definitely a shareable “ jumpstart “ kinda morning moment!
You would never know our Toby Toes goes through as much as he does,
Thank you sweet boys for teaching us Miracles & what a wonderful smiple, sweet & needed at that moment smile brings.
I know I get so excited when these boys are smiling, but it’s such a highlight of our lives, and anyways, you got to admit,
“ what an awesome way to start your day” or any day.
Good Morning everyone.
ill get a pic of these Two together one day, its a bit challenging right now with baby Hunter being so small fragile & having a Toby Toes so crazy strong with his involuntary movements.

Rough Night with these two beauties, It seems Toby has some kidney issues , and i had to change him several times, Also ...
11/14/2025

Rough Night with these two beauties,
It seems Toby has some kidney issues , and i had to change him several times,
Also another UTI Is brewing, I’m sure we’ll have to get some labs done later today
& baby Hunter, he has been up needing me since 3 am, feeding, putting on his special creams for no infections on his stitches, and full outfit changes, while we quietly sit watching Zootopia together in the dark,
I swear these two planned all this, Toby takes the night shift till 1am wihile baby Hunter, then takes the early am hours through the rest of the night. 🤪
But you know what, all of this could be so much worse., god is so good, both boys are home,
Toby’s not in a hospital bed, and we get to sit in the dark all together watching some cartoons.
Good Morning friends, good morning world.
Happy Friday 👣
The picture s below were from last night.
I hope they jumpstart your day, I’ve been missing these smiles.

Here’s the latest with these sweet boys; Toby Toes had a very important, informative meeting with the Epilepsy team, Now...
11/13/2025

Here’s the latest with these sweet boys;
Toby Toes had a very important, informative meeting with the Epilepsy team,
Now bear with me as I attempt to explain some new details.
Toby Toes Epilepsy is so, so very complexed, ( intractable ) is the word they use actually,
One of The questions ( for me ) anyways, is what can we do further, to help Toby’s type of epilepsy? (- For new friends here to Tobys journey, one of Tobys conditions is intractable LGS.type epilepsy,)
Currently, Toby’s maxed out on 4 Seizure Control medication, so Surgery is definitely what’s been talked about at our last few team meetings,both hospitals actually have said this.
What I’m understanding at the moment,
Is the “ RNS “ Surgery, which is quite an invasive Surgery, involving, essentially opening the skull to place devices in areas of the actual brain, which is like a continuous EEG running.
It then learns the patterns of one’s brain, to help onset seizures .
The problem I was told, was Tobys brain waves are all abnormal , meaning this device will never be able to learn “ Tobys “ brain , as there is never a normal moment in Tobys brain waves to compare and help.
What does this now mean for our Toby Toes?
I’m not 💯% sure yet , so standby.
What doctors want to do for Toby at the moment is a longer Hospital admission, where they will titrate a little, one of his seizure meds down,
And be ready for his seizure s, so they can gather some more information.
Toby has never done this, it’s a scary thought,
Seeing Toby go through some of the bigger seizures.
one can never get used to it. And it’s rough on sweet Toby Toes.
I know what to do, but it’s just awful to see sweet Toby go through it, but at least we know hes in good hands at the hospital , closely followed and The teams are there ready.
I’m not sure how soon yet, Toby will be admitted again, but that’s were the teams are thinking.

Ok Baby Hunter, it’s definitely been a lot of sleepless nights since his surgery
sweet little Hunter has been such a trooper though, trying to handle his pain the best way a baby can. Like a big 4 month old lol
For baby Hunters privacy, I held disclosing to many details regarding his recent surgery,
and this is
Really because I wanted to protect & give a little privacy for when he’s older.
Such a balance, but know his tubes & reconstruction are healing nicely 🙏🏻
Im seeing alot more smiles,
And guess what !!!!!!!
Hes starting to bable & laugh, it’s so cute hearing all these “ new sounds” .hes doing.
We are back to having to log everything again though,
This is because Hunter has lost a little weight and is not gaining at the moment.
He looks perfect, but doctor’s want to keep a closer eye on this too.
Baby Hunter has the Cranial specialists seeing him tomorrow, so I’ll guve a better update on this after.
What blessings these boys truly are,
And i think Toby Toes Is understanding more on his very important “ big brother “ role 👣🤪
I really thought I saw Toby , ( in his non verbal way ) tell baby Hunter some pointers on “ how to be brave “ last week, even wearing his super hero cape.
This is a brief update of whats currently going on,
It’s so busy, but you can only do your best !
RIGHT !!! !
Look forward to updating more tomorrow , as i know this Is already long enough lol.
Sending high footsie s & hugs.

Sweet boy has had a rough few days, experiencing a lot of pain, but I think he has finally gotten through the worst 🙏🏻🙌B...
11/11/2025

Sweet boy has had a rough few days, experiencing a lot of pain, but I think he has
finally gotten through the worst 🙏🏻🙌
Baby Hunters lost a little weight, but I was told today, he is otherwise recovering well, most of his stitches are dissolvable too, so this is so wonderful.
Tomorrow will be a much better update,
We’re all so wiped out. but wanted to do a quick update 🤪
Hope everyone is well, sending hugs & good night from these sweet boys,
Toby Toes & Baby Hunter.

It’s been yet another very busy Longgggg Day for us all!Holding brave baby Hunter again has been such a much needed Comf...
11/07/2025

It’s been yet another very busy Longgggg Day
for us all!
Holding brave baby Hunter again has been such a much needed Comfort for both of us, sweet baby boy just snuggled right up and fell asleep.
Last night was rough on baby Hunter, he has been crying a lot due to all the discomfort & pain.
He’s too young for things like Motrin,
So doctors gave him only Tylenol and some special creams for his site.
Anyways, we are so hoping for a much better night tonight, with little Hunters pain getting less & less. 🙏🏻
Toby boy saw his epilepsy team today,
gosh is his epilepsy so very complicated,
But, guess what? There are plans in the works,
Yes plans ( fior us anyways ) equals “ Hope “ .
I promise to share Toby’s stuff tomorrow aswell
I’m really feeling run down, but wanted to hope on here for a quick update on these boys.
Your love & prayers have been amazing,
Please pray tonight for Hunters pain level to go down and for a better night for him, he’s so uncomfortable.

Beautiful baby boy is resting, gosh, he’s so pure and perfect 🙏🏻❤️ Love you baby Hunter so very much, everyone is prayin...
11/06/2025

Beautiful baby boy is resting,
gosh, he’s so pure and perfect 🙏🏻❤️ Love you baby Hunter so very much, everyone is praying for you little buddy and big brother Toby Toes & dad are waiting for your giggles.
Rest sweet boy, praying for a good night. Goodnight friends, your love and prayers have been amazing 🙏🏻🙏🏻🙏🏻🙏🏻 update in the morning.
Reminder; Double votes ( for free for a few more hours ) let’s try to keep him in this competition,

https://babyoftheyear.org/2025/hunter-7d50

11/05/2025

We are all just waiting for Baby Hunter to wake up, he is being watch very closely and he is doing ok 🙏🏻❤️

Be Brave little Hunter 🫶🏼 He’s in the OR now, pray for everything to go well for him 🙏🏻
11/05/2025

Be Brave little Hunter 🫶🏼
He’s in the OR now, pray for everything to go well for him 🙏🏻

Address

P. O . Box 17311 Encino
Los Angeles, CA
91416

Website

https://gofund.me/2ca084bf

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