Hello Son<\/p>\n\n
And happy monthiversary! 13 months \ud83d\ude09 <\/p>\n\n
Latest News:<\/p>\n\n
I weigh you every Monday morning when you wake up.
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. <\/p>\n\n
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… <\/p>\n\n
What’s certain is that we’ve managed to regain some control of the situation, and you’re slowly starting to enjoy eating again.
Stable situation.<\/p>\n\n
There are variable days, sometimes with evenings where you’re very breathless despite your saturation remaining consistently above 92%.<\/p>\n\n
By the way, it’s now been a month since you stopped using oxygen!<\/p>\n\n
We’re continuing the routine: motor physio, respiratory physio, NIV, aerosol, Powerbreathe, etc., etc…<\/p>\n\n
Your teeth are growing, and that can’t be helping with eating or breathing due to the pain.
We had an online appointment with your pulmonologist.<\/p>\n\n
She saw your scan and noted overall improvement.
To explain simply, bronchiectasis is an abnormal and permanent dilation of the bronchi that promotes mucus accumulation and repeated lung infections.
So we must continue to protect you from the slightest respiratory virus for several more years.<\/p>\n\n
As a result, we don’t go out anymore and live a bit in antisocial pandemic mode.
She’s considering a new pulse therapy: a high dose of corticosteroids for 3 days.
We had more or less considered dupilumab too, but it’s currently on hold pending further tests.<\/p>\n\n
Speaking of autism, you now have an occupational therapist again to manage your various developmental delays.<\/p>\n\n
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.
At the same time, your parents are a bit weird too… and the thing is hereditary, so…
And honestly, I think I prefer that to bronchiolitis obliterans…
I’m kidding, I don’t think that’s the case. But I’m ready for anything. <\/p>\n\n
Your nanny, who had been with us since Fortaleza, officially returned home 15 days ago, and I’m happy!
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. <\/p>\n\n
I think it’s important to note a few anecdotes about you so we can remember them later.<\/p>\n\n
You love calling your grandpas, grandma, and great-grandma in France.
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!<\/p>\n\n
You also continue to try to talk, with “mamamamamaaa.”
And this morning, you called your ball “banana.”
Things are moving!<\/p>\n\n
In recent weeks, things have progressed.<\/p>\n\n
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.
The second Brazilian insurance company approved a one-month authorization for reimbursements.
The third insurance, a French one this time, taken out at the end of 2025, started reimbursing certain things in recent weeks.
As your mom says, “Plan A, Plan B, Plan C”, I even have a Plan D.<\/p>\n\n
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\u2014great!<\/p>\n\n
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. <\/p>\n\n
However, all of this is a huge time sink.
They do everything not to pay anything.
And precisely, for all this time-consuming part, I decided to put my expertise into practice.
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! <\/p>\n\n
Your grandpa Robert is actively working on his August sports challenge and has found big sponsors like Plattard<\/strong> or the Auvergne Rh\u00f4ne Alpes<\/strong> region, for example!<\/p>\n\n We also have several influencers who will share the challenge, including former finalists of Pekin Express<\/strong> and maybe others soon \ud83d\ude09<\/p>\n\n The main goal is to communicate about your very rare illness.<\/p>\n\n