04/17/2026
Ready for a fun little read;
What a week!!!!!! We started off with Monday being a monster of a day,
there were just so many doctors to see for both boys and the very important GI meeting with a whole new specialist.
Everyone………. I am not sure yet,
as we just met her, but Dr W. was very kind to our Toby Toes, even gave him a hug, foot five & smile, looking at him,
Knowing “ Just “ how much he’s been through already, calling him so handsome & just beautiful 🙏🏻
We discussed some plans to move forward with & try till we see her in a few weeks, ( she even gave me her personal cell # in case something happens till we see her again)
Anyway s, there’s a lot to go over when you first meet Toby, so I didn’t want to overwhelm everyone at our first meeting & I kept a bit quieter,
Just to listen
but I will ( for sure ) have a list to introduce next time.
So I say this is a “ Win “ for our Toby boy 🙌 staying positive is definitely a start,
For everyone that’s followed our boy here for some time, you then know the many hardships he’s gone through with intestinal & GI issues.& that horrible admission to the hospital for months & months with some new doctors,
they were so horrible to Toby in the end and he was in SO much pain,
Anyways, it really was all so traumatic for everyone but moving forward and hopefully upward 🙏🏻
After seeing that specialist,
My car got in a hit & run on the side passenger Mirror,
Thankfully & most important is, we’re all ok & it was just the mirror,
But it felt like such a loud “ BANG “❗️
The whole car shook real bad too,
It felt like there would be more damage really & it all happened so so fast and ugh that person “ was gone “
Ugh 😑
So I didn’t have time to process as we had to keep to schedule and drove very carefully to the next hospital CHLA, for baby Hunters appointments, with Toby’s nurse following nearby.
It was a challenge, let me tell you,
Toby’s big wheelchair blocking the back view and no side mirror, so it was a total blind spot.
Now, Baby Hunter has a few concerns going on, that I’m not sharing yet till we find out more, he is also losing a little weight, he only weighs 14 pounds,
So with that, his primary doctor wants baby Hunter followed more closely 🙏🏻
Please, please add him in your prayers, that everything will be ok for him, & of course continue adding our Toby too.
Baby Hunter, you’re perfect.
Fast forward our week a bit , with more specialties, home hospital school, nurse visits, a new music teacher 3 new therapist for baby brother, borrowing a car ( so I had to use a smaller wheelchair for Toby ) just to fit in this car so we don’t run behind with Dr and I somehow have to find extra $ to pay outta pocket for this hit & run $$$$$……..…..
To yesterday, after meeting with the primary Dr ( for 4 & 1-2 hours ) and 1 specialist, get ready for it……….
the therapy pups we’re waiting for us, they had therapy dog appreciation day going on, and as soon as we rushed over to them, they all cheered and said yay “ Toby “ yay “ baby Hunter, “
there you are, cameras came out,
And omg! they all truly made our whole week.
I know this wasn’t really a medical update and I’ll do one real soon,
there’s a lot, this was more of a life update,
I mean I got Baby Hunter “ screaming “
Next to me, keeping me handless,
he’s teething & always wants to be held, Toby’s tubes just started beeping and meds are due now, as I write this.
I really do wish I had at least 8 arms sometimes & selective hearing ,
So I could block out the screaming. Hahahaha
But hospital life has made that “ impossible “
Any medical parent can totally agree with this one,
You can hear a penny drop from the other side of another room,
Because of all the years of the machines beeping ( anyways for me ) to have to run and keep our babies here.
Anyways, I really truly love you all
And definitely couldn’t have the strength to keep going without you.
Your prayers are moving mountains,
I’m so ready for more Miracles from our boy here.
sending hugs from me and the boys.
Below our picture s from yesterday s
Therapy doggy appreciation day.
( for HEPA purposes, I can’t share all the wonderful group photos ) but the boys loved it all.
