Good evening, my son.
Today, I’m writing to you this evening.
These past few days, I feel like you’re developing well!
You’re becoming more expressive, more playful, more alert.
The doctor who came this morning hadn’t seen you in two weeks. His reaction was clear. He said you had made good progress. And he’s right. You laugh more, you interact more, and you can almost sit up.
Your strong retractions are still there, and they will probably remain for a while longer, but despite that, we clearly see your progress.
And after so much time seeing you lying down, fragile, hooked up to everything, seeing you develop like this feels incredibly good.
I have three things to note:
First, yesterday, we had an online appointment with a surgeon to discuss a possible gastrostomy. This was an option that had been brought up after the consultation with the gastroenterologist. The surgeon explained to us that before making a decision, we needed to wait for several things: the genetic results, your progress with medication, and the assessment of the real necessity. According to him, it’s not urgent. And honestly, that’s a relief for us. He also explained how it would work if we ever had to do it here in Fortaleza, how to reduce the risks of infection, how to organize ourselves, what precautions to take. If it has to be done, it will probably be before January. But we hope it never comes to that. Just as we hoped to avoid the tracheotomy. And just as we hope to one day be able to remove your feeding tube!
And you give us reasons to believe, because you’re eating better and better. Today, you ate with a spoon again with the speech therapist, and even if it’s not perfect yet. What progress!
Then, we had another topic today. Your private part. Yes, I know, I’m talking about your private part. Shall we make a little
Just kidding, but lately it’s been bothering you. It’s a bit irritated, a bit red, and obviously that raises questions.
How to wash a baby boy’s. What to do. What definitely not to do.
And then, we discover that advice changes completely from one generation to the next. Our parents used to do certain things. Today, we’re mostly told not to do them.
It’s funny. The body is the same, but recommendations change with the times.
Anyway. We’re learning.
Third thing. Today, your mom went to the hairdresser. It had been months since she had taken a minute for herself. I told her it was non-negotiable. She’s going to come back all fresh and radiant. And I’m sure that tomorrow morning, when you open your eyes, you’ll look at her with your little smile! And you’ll say to yourself, “Woohoo, my mommy is so beautiful!”
And finally, I spent time with Grandpa Robert and Grandma Michèle. They worked hard for you.
They created an association in France. Thanks to that, we’ll be able to organize things.
Many people advised us to open up for donations. I didn’t want to because I don’t like asking. But at some point, reality sets in. Everything not covered by insurance becomes complicated to manage. The association will allow those who wish to help us to do so properly and transparently, and this money will be strictly used to cover what insurance refuses. I’m currently organizing everything.
There you go, son.
It’s late.
You’re having trouble falling asleep tonight, but you’ll get there eventually.
I’m waiting for your mom to come home. We’ll eat something quickly, and then I’m going to sleep early. Because like every morning, tomorrow we’ll be up around 3 AM for a new day.
Good night, son.
I love you
Dad
