Hello, son,
Yesterday, we had a rather pleasant Sunday.
I hadn’t felt that in a long time. Since we opened up for donations, the financial pressure has eased a bit, allowing me to spend time with you on the weekend without feeling guilty about not being in front of the computer.
So thank you to everyone who supports us. Thank you from the bottom of our hearts.
Yesterday, we also had someone to help us. We entrusted them with all those small tasks that eat away at our days. Meanwhile, your mom and I were able to play with you. And, a complete luxury, all three of us even took a nap. We put you between us. You turned your head left, then right, then you laughed. You were adorable. I love your laugh.
On Saturday, you played with a sponge for the first time with the occupational therapist. It surprised you and made you laugh. I filmed it. I watch this video on repeat. Your innocence and your gaze touch me every time.
Since your hand, foot, and mouth disease, your breathing has remained difficult. You are having bronchospasms. Your breathing starts to wheeze. So we give you Aerolin 3 times in a row, then Atrovent. And fortunately, it helps you. I think this will be our daily routine for many years, so I try not to think about it too much.
Over time, I’ve developed a kind of dark abyss, where when something I don’t like happens, it falls into this abyss. And then I don’t remember it.
However, when you cough, you seem to be in pain. It’s as if I feel the pain in my lungs.
The afternoon respiratory physiotherapy session still hasn’t taken place. Yet, it’s written in black and white in the insurance contract. It’s been three weeks since you’ve had your two Saturday and Sunday afternoon sessions. Three weeks without explanation. I’ve been sending messages. I’m told I’ll get a response. No one replies. It’s one thing to refuse a request. It’s another not to even honor what’s contractual, especially when it concerns a sick baby’s breathing.
Last night, your mom and I tried to talk about the future. It’s really not easy because there are too many variables right now.
The choice is mainly between returning home, or going to France.
We’ll see how all of this evolves, but we would just like to have a normal life. That will be our goal in 2026.
By the way, for our European friends, please be very vigilant, bronchiolitis is rampant. Yesterday we learned that an acquaintance has their baby intubated at Paris Necker ICU because of this awful disease.
I invite you to read this article about bronchiolitis.
With that in mind, I’m off to give you your first medications.
I love you,
Dad.
