Hello, son,
As always, there are ups and downs.
These past few days haven’t been as good.
You’re much more restless in the evenings. We don’t really know why.
Teething? Fatigue?
You don’t want to take a bath anymore. You scream.
At night too, you seem more restless. You manage to sleep, but you move around a lot.
And then this morning, we weighed you.
It was on an empty stomach, for the first time.
You weighed 7.32 kg for a baby who will soon be 9 months old.
That’s 0.08 kg less than two weeks ago, at 72 cm.
The fact that you’re not gaining weight is concerning.
Yet, you love to eat. You eat everything we give you.
Despite that, you’re not gaining weight.
Your bronchiolitis obliterans makes you use an enormous amount of energy to breathe.
Your body expends everything to keep the machine running.
Your pediatrician came by yesterday.
She gave us some recommendations, but nothing really new.
We’re going to increase your daily caloric intake and try to give you more water.
On this point, you like coconut water.
We can’t give it to you during meals because you cough and have reflux.
So we give it to you between meals.
It’s a small victory because we’ve tried everything to get you to drink water.
Your mom made magic potions that didn’t work.
Ultimately, you were born on the beach. So it was meant for you to drink coconut water!
Another thing that’s really giving us a hard time is your stomach protection medicine, Esio.
You hate it and you have to take it before eating.
You scream, you squirm in every direction.
It complicates taking it, and you risk choking.
Unfortunately, we can’t mix it, and we can’t reduce the dose.
We’re going to try to dilute it less so you can take it faster.
On Instagram, your guardian angels asked us if you still needed oxygen.
Yes, you still need it, but we’re trying to reduce it little by little by monitoring your saturation and respiratory rate.
Today, you’re averaging 0.4 L per minute.
As a reminder, you left the hospital at 1L/min
The physical therapist cuts it off for two hours a day to do exercises and train you to live without it.
The goal is to reduce it more and more in the coming months, hoping to live without it, or even only at night.
That would be amazing!
This morning, I realized it was the last day of the year.
I don’t think I’ve ever been so happy for a year to end.
Even though it’s the year you were born, I hated this year.
I’ve never lived through such an anxious year in my entire life.
And I hope I never experience that again.
Out of 12 months, 8 were very difficult, including 5 where we lived in terror.
Despite everything, the best moment remains your birth.
At that precise moment, time stood still.
Then there was Christmas, where we had excellent times.
Little by little, the good moments are becoming more and more frequent.
I feel like we’re really starting to live.
For 2026, I want something simple:
A normal life:
- To come back home,
- To be reunited with our pets,
- To never hear about hospitals again.
And I’d like to be told that you have nothing wrong with your lungs anymore.
That there are no after-effects and that it’s a MIRACLE!
That’s what I want for 2026!
And your mom and I will do everything to make it happen!
I love you, my little potato.
Dad
P.S.:
Thank you to all our guardian angels who supported us this year.
We wish you a happy New Year’s Eve.
And in France, it’s bad luck to say ‘Happy New Year’ before midnight, so I’ll say ‘see you next year’ 😉
