Hello, son,
A quick update.
Let’s start with the classic: food.
I think this time we’ve really figured out how you work, and we’re getting better and better at helping you gain weight. In any case, over the past few weeks you’ve been growing steadily. You were 8.37 kg this Monday, and I even think you’ve gained more since then. We’ll see next Monday.
Your appetite is back, you have less reflux, and feeding you has become a pleasure again. Before, it was a real ordeal. Today, it’s a nice moment again. I think you accept it better because you’re happy and relaxed, and so we finally feel like we’re back on track.
With hindsight, when we think about everything that happened, it’s actually pretty simple to understand.
You needed to eat very high-calorie meals to gain weight. And we couldn’t manage to give them to you properly anymore because we were exhausted, stressed, sometimes sad too, because life isn’t easy every day. So we ended up delegating a lot of meals to your nanny.
She did what she could, truly. But she had to force you more and more, make noise, distract you, move around, play games, just to get the spoon into your mouth. And little by little, you ended up completely put off.
So we had to accept going all the way back to square one.
Accept that you might lose a little weight temporarily. Accept starting again gently. And above all, put pleasure back before calories.
The consultant who’s been helping us from France also gave us lots of simple but really useful tips. For example, your chair is suspended and your feet weren’t resting on the floor. She explained that for some children, having stable support with their feet can help a lot during meals. So we rigged up a system so you can rest your feet properly.
Lots of little details like that which, put together, change everyday life.
And listen… for now, it seems to be working.
Second point, the most important: breathing and lungs.
I think we’re hitting a kind of glass ceiling.
Today, you don’t need oxygen all the time anymore, but we can see you’re struggling. You’re making more and more effort, you’re crawling fast, you’re starting to want to stand up, to explore more… but as soon as you get into these activities, you get very out of breath.
In those cases, your breathing wheezes like you have asthma. You have strong retractions. Your belly moves in and out in an impressive way, like a baby with a bad case of bronchiolitis… except for you, it’s almost constant.
And I have to admit that for us, your parents, it’s extremely hard to live with.
It’s been a year already that we’ve been fighting this, and sometimes we wonder if it will be like this your whole life. It’s a horrible thought. There are moments when we simply think, “Why?”
And me, with my rational brain, I question everything sometimes. I look for causes everywhere. I wonder what choices I made. Sometimes I even go way too far in my thoughts and tell myself that if I hadn’t been born, then you wouldn’t have been either, and you wouldn’t have to live through this.
And I’m not speaking for your mom, but I think she works the same way. Truthfully, we don’t talk much about these darker sides of our thoughts.
But the truth is, life is constant chaos. And sometimes, there’s no logical answer…
It’s easy to say you have to accept uncertainty when it’s about business, money, or projects. But when it affects your child’s health, it’s a whole different story. Because it feels deeply unfair.
Despite everything, we keep moving forward.
We’re also trying to understand why, on some days, you seem to breathe less well.
Your mom has worked a lot on this lately. She talked with physios, attended conferences, read a lot of things. And today, what we understand better is that atelectasis isn’t treated only with physiotherapy.
Physio helps, yes. But to reopen the areas of the lungs that close up, you often need what’s called positive pressure—that is, sending pressurized air into the lungs to try to reopen them.
Then physio, breathing exercises, and certain tools help keep those areas open over time. But to open them up, unfortunately there aren’t a thousand options.
So we’re focusing more on that.
We recently bought a high-flow machine, mainly to help move air around and keep the lungs cleaner. And above all, we’re now trying to be more consistent with the NIV.
And actually… big win: for the first time, we managed to put the NIV on you during the day while you were awake.
It might seem trivial to some people, but for us it’s huge.
Until now, your mom had to put the mask on you while you were asleep, by hand, quietly. You often woke up, you cried, and we ended up taking it off.
I think that, in fact, you learned that if you cried, the mask would go away.
So this time, we held firm for a few minutes despite the crying. And after a while… you accepted it. You got used to it.
So we’re going to keep going in this direction. Always with the same philosophy: trying to bring pleasure, calm, and trust back into something difficult.
Because if you accept the NIV better, then we may be able to help your lungs more and give you every possible chance to recover as much as possible.
At the same time, we also noticed something strange with your saturation during the night.
We use the Owlet sock to monitor your oxygen. Sometimes it showed drops below 90%, but when we looked at the summary in the morning, that data never appeared.
So of course… your geek dad started digging.
With my AI tools, I ended up recoding an app that pulls the sock’s real data directly. And then we realized that you do indeed sometimes have desaturations during the night.
Now we can pull a lot of precise stats. We’re trying to cross-reference everything: saturations, sleep periods, symptoms, physio sessions, NIV, meals, rough nights…
The goal is to turn all of this into real, smart medical tracking with reliable daily stats that we can share with the doctors.
And on top of that, also use AI to try to detect links or patterns we wouldn’t necessarily see with the naked eye.
And alongside all of that, you’re still an incredible child.
I love it because now I can ask you for kisses and you come over all happy with your little mouth and give me huge slobbery kisses, then you laugh.
We’re starting to have more and more interactions, and you’re beginning to understand and communicate more.
These wonderful little moments erase this ever-present illness.
To finish, we’re also going to talk about your grandpa’s project.
His sports challenge around your illness is moving forward more and more. The website has been updated, the Instagram and Facebook social media accounts have been created, and the project is slowly taking shape.
The site is:
If anyone wants to go take a look or support the project, please do.
We’re also looking for partners and companies that would like to join the adventure. We already have a few major groups who have joined us.
All the information is available on the website.
That’s it, my son.
That’s all for today.
I love you, my little potato.
And you’re even more of a little potato now that you’re gaining weight!
Dad
