Hello, son,<\/p>\n\n
I’m publishing this post and you’re currently on my lap.<\/p>\n\n
Here’s the latest news.<\/p>\n\n
You still don’t need oxygen and you’re keeping your saturation above 92, even at night! WELL DONE! <\/p>\n\n
This morning, like every Monday, I weighed you, and you’re back to the weight you had two weeks ago. It’s not really a victory, because you’re bordering on malnutrition, but it is one nonetheless: you haven’t continued to lose weight. <\/p>\n\n
Since your nanny Fabi moved back to Fortaleza for good, it’s really just the three of us at home. It’s a change for us, and we’re learning to adapt. And maybe, in a way, it’s also helping you find your bearings again. <\/p>\n\n
The problem is that you weren’t eating anymore, and especially that you couldn’t stand eating while sitting. By having all our meals together as a family, it seems like this behavior is starting to change. It gives us hope. <\/p>\n\n
Last week, we learned that a child with the same disease as you, over eight years old, was going to be listed to receive a lung transplant. The second one in three months among our contacts in Brazil. I can’t even imagine what those parents are going through. And as parents of a child with the same disease, it doesn’t reassure us about your future. <\/p>\n\n
You know, son, I don’t know if we’ll have to go through that stage one day. Your aunt did it at 18, the year your dad was born, and she managed to have a good life afterward. But if we can spare you that, we will. <\/p>\n\n
It’s obvious that as parents, we’re doing everything possible to reach the miracle we’re all waiting for.
I have a hard time accepting it. I don’t think I’ll ever accept it, actually. <\/p>\n\n
But that’s life…<\/p>\n\n
The truth is that miracles are rare.
That said, that’s my view of things. What I really want is for you to keep an open mind, to listen to different voices, and to choose the path that will do you good. <\/p>\n\n
The thing is, your lungs can still grow and improve until you’re eight. After that, it’s over. What will really impact your improvement is absolutely avoiding viruses, continuing the exercises, having good nutrition, and, I hope, advances in science. <\/p>\n\n
With your mom, we’re looking for studies that go in that direction. But there’s nothing today that can erase the scars in the lungs.
We absolutely must keep raising awareness about your disease. Grandpa’s project, lescolsdusouffle.com<\/a>, will help us do that in France. On that note, we’re looking for companies that want to donate prizes for the raffle! <\/p>\n\n