Hello, son,
Since last time, we’ve gone through a bit of a tense period again.
(You know the rollercoaster of having a child, with the added challenge of them being sick?)
Vaccine and Fever
Following your vaccine, you had 2 days of fever, and your saturation dropped again, sometimes as low as 85 when you sleep. You also got a big bruise on your thigh.
On the third day, yesterday, everything was better. Your breathing was perfect.
We took the opportunity to take you off oxygen for a while, just like we used to before your viral episode.
100% saturation without oxygen!
Then, after a while, you got tired, and we put you back on oxygen.
I hope this trend will continue and that eventually, you won’t need oxygen anymore.
The Weight Gain Challenge Continues
Our joy from last week, when you had gained a little weight, was short-lived.
These past 2 days, you haven’t wanted to eat anything.
Spoonful of food: you close your mouth and push it away. We’ve tried everything.
Spoonful of water: you accept.
So, we’re trying to give you food hidden in water, or milk by the spoon.
But you’re so smart that you can detect what’s in it at the last moment… and refuse.
You don’t know how to drink from a bottle, and that could pose a risk of bronchoaspiration. So, we have very few solutions…
We’ve called on a speech therapist again, who now comes every day to help us.
According to her, it could still be related to your teeth coming in. Your gums are very inflamed.
The problem is, we can’t wait days like this. The question of gastrostomy is back on the table… and it’s very stressful.
Neurologist Appointment
Yesterday, your mom went to the neurologist following your MRI.
She confirmed that your brain images are normal.
She asked for information about your behavior.
We explained to her that sometimes you stare fixedly at a spot without moving, or while laughing.
I often joke that you see dead people.
(I know, it’s not funny, but we make humor with what we have)
And then, sometimes, you make certain movements or hit your face.
According to her, these could be early signs of autism or ADHD.
My personal opinion: I think everyone has peculiarities.
But because we’re immersed in the medical world, unlike parents whose children haven’t experienced major health problems, we multiply the hypotheses.
It’s like a car that has already had a major breakdown.
Someone who has never had a problem will hear a small noise and keep driving without thinking about it.
But for us, as soon as an unusual sound appears, we turn down the radio, we listen to the engine, we wonder where it’s coming from, and we already imagine several possible causes.
Not because the car is necessarily breaking down.
But because experience has taught us to remain alert.
When you live through so many medical situations, you end up functioning the same way.
We don’t invent problems; we simply become much more attentive to the slightest signal.
I think we now need to wait and see how all of this evolves.
She advised us to break routines and do more occupational therapy to stimulate you and avoid any cognitive rigidity.
So, son, we’re going to take you on adventures. You’ll see!
And us?
Your mom and I are moving forward, but we’re tired.
This constant pressure around food weighs heavily on us.
Yesterday, I went to see a psychologist to work on my trauma from what happened at the hospital.
He had me practice a technique called EMDR.
I experienced sensations I had never felt in my life.
My hand hurt for hours afterward, as if the pain of having furiously smashed doors in the past had returned.
Incredible. The brain is an amazing machine!
There you go. Life is beautiful, and we keep moving forward. Always!
I love you, my little potato.
Dad
