Hello Son
And happy monthiversary! 13 months 😉
Latest News:
Weight and Food
I weigh you every Monday morning when you wake up.
You’re back up to 8.2 kilos. You were this weight a month and a half ago, then you lost a lot…
So we can say that today you’ve been stable for 1 month. We now hope you’ll continue the growth trend of the last 2 weeks.
It’s worth noting that we’ve managed to get back to 5 meals a day instead of 4, and that we’ve unfortunately had to go back to a good 90% milk (Neocate, Neoadvance, Neoforte, or specialized formula). But hey, if it works…
What’s certain is that we’ve managed to regain some control of the situation, and you’re slowly starting to enjoy eating again.
So we think this is positive for the long term. Fingers crossed!
Breathing
Stable situation.
There are variable days, sometimes with evenings where you’re very breathless despite your saturation remaining consistently above 92%.
By the way, it’s now been a month since you stopped using oxygen!
We’re continuing the routine: motor physio, respiratory physio, NIV, aerosol, Powerbreathe, etc., etc…
Teeth
Your teeth are growing, and that can’t be helping with eating or breathing due to the pain.
But this is a classic baby problem, so no panic!
Pulmonologist
We had an online appointment with your pulmonologist.
She saw your scan and noted overall improvement.
However, she detected a possible early stage of Bronchiectasis, which is not good news.
To explain simply, bronchiectasis is an abnormal and permanent dilation of the bronchi that promotes mucus accumulation and repeated lung infections.
Your scars weren’t helping already…
So we must continue to protect you from the slightest respiratory virus for several more years.
As a result, we don’t go out anymore and live a bit in antisocial pandemic mode.
Personally, that suits me.
Your parents are already a bit autistic on the edges anyway 😉
She’s considering a new pulse therapy: a high dose of corticosteroids for 3 days.
This would be the fourth, after the 3 you already had in the hospital.
The idea would be to reduce inflammation and perhaps achieve a beneficial effect on your lungs?
We’re trying to see if this could be done at home rather than in the hospital.
It’s still under consideration.
We had more or less considered dupilumab too, but it’s currently on hold pending further tests.
Autistic?
Speaking of autism, you now have an occupational therapist again to manage your various developmental delays.
According to her, you have certain behaviors that could be associated with autism, but that doesn’t necessarily mean you are autistic, especially with your 6-month developmental delay.
So it’s something to monitor.
To be honest, we’d been told this before. So nothing new there either.
At the same time, your parents are a bit weird too… and the thing is hereditary, so…
As they say in France, the apple doesn’t fall far from the tree.
And honestly, I think I prefer that to bronchiolitis obliterans…
But we’ll get 2 for the price of 1?
Special offer?
I’m kidding, I don’t think that’s the case. But I’m ready for anything.
Nanny
Your nanny, who had been with us since Fortaleza, officially returned home 15 days ago, and I’m happy!
Not that I didn’t like it, but it’s so nice to be just the three of us at home!
And we found a very nice lady from Barrinha who comes to help us for 4 hours a day in the afternoon. This time allows us to refocus on our work and live a normal family life. Perfect! Thanks to your mom for taking care of all the organizing.
Anecdotes for the future
I think it’s important to note a few anecdotes about you so we can remember them later.
You love calling your grandpas, grandma, and great-grandma in France.
And you wave goodbye and hello to them.
You like to shake your head no, and you love it when grandma sings “Ainsi font font les petites marionettes” or “Petit papa noel” to you.
Your great-grandmother Jeannine loves seeing the videos I send you and talks to me about you every day, telling me you’re really handsome and seem perfectly healthy!
You also continue to try to talk, with “mamamamamaaa.”
I’m waiting for “papapaaaa” 😉
And this morning, you called your ball “banana.”
Do you have Minion blood?
It’s possible, hahaha.
Insurance
Things are moving!
In recent weeks, things have progressed.
The first Brazilian insurance company you were hospitalized with isn’t covering us because where we live isn’t in their coverage area. I love them.
We’ll wait a little longer with them, then we’ll move on to the next step with all our strength and love.
The second Brazilian insurance company approved a one-month authorization for reimbursements.
We took it out when we saw that the first one wasn’t up to par.
We just tested the first claims today; we’ll see how that goes.
In any case, we’ve taken them to court because they refuse to handle your case for an invalid reason, according to the lawyer…
But administration and justice are slow, even if the second judge (the first one had surgery) seems to validate the cause.
The third insurance, a French one this time, taken out at the end of 2025, started reimbursing certain things in recent weeks.
We’re getting about 40% coverage for some treatments.
It’s not perfect, but it’s better than nothing.
As your mom says, “Plan A, Plan B, Plan C”, I even have a Plan D.
And then we also have Brazil’s free health service that has been helping us a lot since we came home. It’s actually excellent! Oxygen at home, some medications, monthly blood tests at home—great!
For now, let’s say it covers part of the insurance costs… which is a big monthly budget for not much return at the moment… But in the future, it will allow us to breathe financially.
However, all of this is a huge time sink.
Your mother and I have spent hours… and a lot of nerves on it since the beginning.
They do everything not to pay anything.
Except perhaps the French insurance, which seems honest.
But asking for a reimbursement is worse than the house that drives you crazy in Asterix and Obelix.
And precisely, for all this time-consuming part, I decided to put my expertise into practice.
I set up an AI that manages all your administrative health: results, appointments, accounts, reimbursements, documents, follow-up, etc.
It has become almost a pleasure to do in thirty minutes something that previously took me a whole day. The WhatsApp conversations with their agent that last for hours… there… there’s nothing to do, but your mom excels!
Generally, I use our needs for your illness to catch up and massively train myself in using AI. And maybe in a few years, you’ll even have your own AI clone of Dad!
The projects of the Hope For Gabriel association
Your grandpa Robert is actively working on his August sports challenge and has found big sponsors like Plattard or the Auvergne Rhône Alpes region, for example!
We also have several influencers who will share the challenge, including former finalists of Pekin Express and maybe others soon 😉
The main goal is to communicate about your very rare illness.
If people reading this want to help, it’s here: https://lescolsdusouffle.com
You can share the link, and there are many ways to help. The easiest: share!
Your grandma Michelle is also talking about the project, and there should be events organized in a well-known gym franchise in the Beaujolais region.
All of this will be relayed in the media!
News from the friends in the ICU
Since we spent several months in that cursed hospital, we made some acquaintances.
Some babies got infections or viruses again and had to return there…
The city of Fortaleza is really to be avoided during periods of virus circulation for babies!
Also, I had shared a fundraiser for a family trying to take their little girl to São Paulo because the hospital refused to operate on her.
Well, they’ve had an extremely difficult year, but we learned today that they will finally all be able to be together very soon.
I’m so happy for them. I hope we can all get together in a few months/years and celebrate life around a good old barbecue! We talked about it with her dad when we were counting pigeons in the hospital courtyard…
I can’t even imagine the year they must have gone through.
I went crazy in 6 months… so a year is inhumane.
All this for a health insurance/hospital that doesn’t take its responsibilities…
And your parents, son?
It’s still not easy every day…
But today, we mainly face “normal” parental problems, with the logistics of a sick child and a complicated history.
I think your mom has planned a little message that she’ll post on Sunday for Mother’s Day.
Personally, I can now live happier* and no longer think about the future or the past.
(* provided that you are doing well and breathing well)
I often ask your mom how she’s feeling on a scale of 0 to 10, with 0 being sad and 10 being “super happy.” Her answer varies but tends towards improvement, and as for me, I’m regularly hitting 8s!
I wake up in the morning when you do, telling myself that I’m living a new life.
And I’m going to enjoy every minute of the day with you.
And tomorrow will be another new life.
And what I often tell myself:
A year ago, you were in the hospital.
On 05/09, it will be the “anniversary” of the blog’s launch.
On 05/11, it will be the day I was told there was nothing more to be done for you… while your neighbor, in the same condition, passed away… I can still see those damn oxynitro bottles, those unbearable beeps, and the staff panicking…
So let me tell you, today, I’m simply grateful that you’re here, at home with us.
I don’t know what the future holds.
But I know that in the present, in this very moment, I’m living my best life with you.
And that I owe it to myself to enjoy these unique moments 1000% that I can never relive, especially since several months have already been stolen from us.
And if we have to live for years without a completely normal life so that you can live without tubes, then I’m ready!
And we’ll do everything to live well!
I love you, my little potato.
Dad
