Hello, son,<\/p>\n\n
As you may have noticed, I’m writing less.<\/p>\n\n
Firstly, because your progress is stabilizing.<\/p>\n\n
Secondly, because I’d generally be writing the same things every day, and honestly, I’m short on time. I’m trying to get back to my work and move forward. <\/p>\n\n
I’ve also scaled back on Instagram<\/a>. That’s not the priority right now.<\/p>\n\n But today, I still have a lot to tell you.<\/p>\n\n For the past few days, feeding you has become a real ninja operation.<\/p>\n\n You take 3 spoonfuls, then you cry.<\/p>\n\n We wait 30 minutes, then we start again.<\/p>\n\n Honestly, I think you’re starting to understand the idea of a whim. And it’s funny.<\/p>\n\n Even though it’s clear your teeth aren’t helping, I don’t think that’s the main reason.<\/p>\n\n We change the menu, the location, the position. We reinvent ourselves, and little by little, we get there. <\/p>\n\n The problem is, you need to eat more than other children. Because of your illness, your energy cost is higher. <\/p>\n\n So we have to monitor your weight very closely and see how it progresses (for now, it’s no longer progressing…).<\/p>\n\n Despite everything, I remain confident.<\/p>\n\n I find that your reflux has decreased. However, we remain very vigilant. <\/p>\n\n With a gastroenterologist’s advice, we’re also trying to gradually reduce the medication over 2 months.<\/p>\n\n I think patience is essential.<\/p>\n\n We’re continuing the reduction procedure, removing oxygen in the morning and afternoon.<\/p>\n\n You’re tolerating it quite well, even though your retractions persist. We know they’ll still be there for a few months\/years. <\/p>\n\n During these times without oxygen, your saturation sometimes drops below 90, but it’s quite rare.<\/p>\n\n We’re seeing a gentle improvement.<\/p>\n\n I continue to believe, and I love seeing you without your catheter in your nose. <\/p>\n\n It’s as if we’re erasing the past, as if none of it ever happened.<\/p>\n\n I saw several posts on Instagram about the hospital where you were.<\/p>\n\n Parents are still having problems.<\/p>\n\n People are saying, ‘they killed my child’.<\/p>\n\n The regional Ministry of Health is launching a new investigation.<\/p>\n\n It’s sad.<\/p>\n\n Other influencers are speaking out against the practices of the health insurance that manages his case. <\/p>\n\n Patients are left without care, even after court rulings.<\/p>\n\n The insurance company lost millions.<\/p>\n\n The CEO was ousted.<\/p>\n\n The truth is revealed!<\/p>\n\n We had to check if you have pulmonary hypertension. The pediatrician wanted precise information. <\/p>\n\n The first time, the doctor had clearly done a poor job. So we had to go back. <\/p>\n\n This time, the doctor was excellent. But you, Gabriel, cried like never before. He couldn’t get all the necessary measurements. <\/p>\n\n He thinks you don’t have hypertension, but he can’t say for 100% certain.<\/p>\n\n He also explained that your lungs and air trapping greatly hinder visibility.<\/p>\n\n As a result, medically speaking, we went there for nothing.<\/p>\n\n But we saw friends from the ICU again. Another warrior child, who stayed in intensive care for months. <\/p>\n\n When I meet people who have been through this, I feel like I’m reuniting with brothers in arms.<\/p>\n\n People who know exactly where we’ve come from and how precious life is.<\/p>\n\n This kind of emotion cannot be understood by those who haven’t experienced it.<\/p>\n\n I can’t even imagine what soldiers feel when they return from war.<\/p>\n\n So, we went back this week. And this time, we managed to do it! <\/p>\n\n I just received the results, and they show no abnormalities!!!<\/p>\n\n Even though we suspected it, given your incredible development since leaving the hospital, the doubt was always there.<\/p>\n\n With the days your saturation dropped below 85 and the ECMO, we knew there was a risk.<\/p>\n\n And honestly, I cried when I saw the result.<\/p>\n\n I’m so happy and proud of you!<\/p>\n\n As I mentioned, I started a community website project with my community of website creators.<\/p>\n\n The idea is to highlight your rare illness and, at the same time, to train myself in new ways of ‘coding’ websites with AI (vibecoding).<\/p>\n\n My idea is to move forward on all fronts, without wasting time, and to share this with the community. As Steve Jobs said in his Stanford speech <\/a>: “connecting the dots”. <\/p>\n\n I think that when you read this article, all of this will seem totally obsolete to you, haha. For those interested, here is the playlist, with about one video per week:\n You don’t want to eat anymore<\/strong>\n <\/h3>\n\n
\n Reflux and company<\/strong>\n <\/h3>\n\n
\n Oxygen<\/strong>\n <\/h3>\n\n
\n The hospital from hell is still making headlines.<\/strong>\n <\/h3>\n\n
\n Cardiac Echo, Episode 2<\/strong>\n <\/h3>\n\n
\n Brain MRI<\/strong>\n <\/h3>\n\n
Community Website Project on Bronchiolitis Obliterans<\/h3>\n\n