Hello, son,
Today, you are 10 months old. It’s February 6th.
Time flies. Even when it’s not easy, time moves forward, and that’s a good thing.
Because we know that with time, surrounded by love and care, you should get better and better.
Every day that passes is a step towards something brighter.
In any case, that’s what your mom and I hope for with all our hearts.
The past two days have been very emotional.
First, there was this article in Le Patriote Beaujolais.
The Beaujolais region is where I come from. It’s a region I love deeply. I used to read this newspaper at your great-grandmother’s house when I was little.
I never would have imagined appearing on the front page one day, and even less for a reason like this…
If I were to be in this newspaper, it would be to celebrate the conscripts with my friends, not to talk about a fight against illness. And even less so, my son’s. But that’s life…
And today, the digital article was published on their website: https://mesinfos.fr/69220-belleville/de-l-enfer-a-l-espoir-pour-gabriel-le-bebe-d-un-expatrie-beaujolais-au-bresil-239322.html
When I logged into Facebook and saw our photo circulating everywhere, I felt that pang a second time. Even though I am infinitely grateful to everyone who shares and supports us, exposing a part of our lives like this is still a trial.
But the cause is greater than our modesty.
We must raise awareness of this rare disease that is now part of your life.
We must also remember something essential: before bronchiolitis obliterans, there was a “simple” bronchiolitis.
A disease that many trivialize, yet it claims children every year.
So if our story can help raise awareness, in France, Brazil, or elsewhere, then it’s worth it!
And it also shows one thing: despite everything, we are still standing. With our heads held high. We keep moving forward, even when the days are heavy.
I want to sincerely thank David Duvernay, the writer, for the quality of his article, as well as Grandma Michelle and Grandpa Robert. Since day one, they have been there. They support us, they help us, they fight with us. You are also lucky to be surrounded by a family who never gives up!
Now, let’s talk about your health updates.
Yesterday, your pediatrician stayed at home for nearly 3 hours to give a comprehensive update. And overall, your progress is good.
Regarding your weight, we have great news: you’ve gained 200g.
Also, your initial measurements were off by 3cm, which changes your position on the curve.
As a result, you’re no longer dropping. You’re slightly moving up!
Gastrostomy remains an option, but it’s not an urgent necessity.
We’re giving you a real chance to continue growing and gaining weight on your own.
And I won’t lie to you: it takes a huge weight off our shoulders, because we weren’t ready…
This morning, you received 2 vaccines at home. As always, it’s not pleasant for anyone, but it’s necessary.
And this afternoon, a quick ambulance ride to see your pulmonologist, the one who followed you at the hospital.
An excellent doctor, to whom we owe a lot (at the time, it was a struggle to get him into that hospital).
He also confirms that your progress is rather positive.
Upon auscultation, a part of your lungs remains damaged. It will be that way your whole life, we know that.
But he reminded us of something essential: you are a child, and your lungs are growing.
With time, new lung areas will develop.
The proportion of healthy lungs will therefore become more significant.
And that’s hope!
He thinks that in a few months, you might be able to do without oxygen, at least during the day.
In fact, it already happens sometimes, even if everything is still very unstable. But the trend is there, and it’s encouraging.
Regarding treatment, we are continuing with inhaled corticosteroids, Spiriva daily, azithromycin 3 times a week, as well as emergency medications (Aerolin, Salbutamol, Atrovent) and the anti-reflux medications, which we are starting to reduce.
The absolute priority remains the same: avoid a new virus!
Meanwhile, continue working on your motor delay and maintaining good nutrition.
Here in Brazil, the rainy season is approaching. And with it, the virus season. It was precisely at this time last year that everything changed for you. So we will redouble our vigilance and maintain our safety protocol.
We also talked about returning home.
It’s not impossible. But it requires impeccable organization: specialists, physiotherapists, medical follow-up… You will need this support for a long time, probably your whole life in one form or another.
We also need to prepare a clear backup plan: when to return to the hospital, which one to choose, who to call.
Nothing will be left to chance.
I don’t think it will be tomorrow.
But if everything continues like this, we’d like to imagine a return by summer.
Perhaps in July. Earlier would be an immense gift, but let’s not rush things.
As every month for your monthiversary since you left the ICU, we bought a small cake.
The photo was taken in a hurry, as the day left us no respite. But tonight, we’ll eat a piece to celebrate this new milestone.
Here’s the photo without the cake lol
10 months!
10 months of courage!
10 months of fighting!
10 months of love!
Perhaps there are a few more of us walking by your side today.
Perhaps some readers of Le Patriote will continue the adventure with us, son 😉
Whatever happens, we keep moving forward.
I love you, my little potato.
Dad
