A new week begins
I’ve decided to change the way I write.
From now on, I’ll be writing to you, Gabriel.
This blog will be, if you wish one day, a trace in time of what happened when you were a child.
Here we go, my filho!
The weekend went rather smoothly.
You still scared us a few times.
Especially on Friday, when we discovered that you had blood in your eye.
Your crazy parents immediately thought it might have something to do with the fact that you had ECMO a few months ago.
But after consulting an online pediatrician, it appears to be a small hemorrhage, a burst vessel.
Either because you’d been pushing yourself hard in the morning with all the specialists, or because the gastric tube attached to your face had been pulled a little too hard, causing your eyelid to droop too much.
This probe makes our lives very complicated.
We’d love to take it off, but there’s still a long way to go.
Some specialists say you should resume bottle-feeding despite the risk of bronchoaspiration.
Others think you’ll go straight to the spoon.
And still others speak of gastrostomy.
Your mom and I are a bit at a loss, but we’re convinced of one thing: the sooner you get rid of that probe, the better.
Yesterday, you tried to speak and you seemed to have a sore throat.
Because of this probe? I don’t know…
But you screamed until you collapsed from exhaustion.
Meanwhile, the organization that is supposed to help us has decided to refuse to pay for the genetic test that an infectious disease specialist, a geneticist, and the Brazilian and French doctors deem essential.
It’s called Exome.
They found a way to say, in their major legal texts, that this was not their responsibility.
But even if there isn’t a day when we don’t cry, we still try to spend some quality time with your mom.
Sometimes we laugh again, sometimes with a bit of dark humor.
I think it makes us stronger.
So yesterday the 3 of us spent some time together, especially in front of that mirror you like looking at so much. You seem to love it when we sing and act silly. So every day your mom and I try to be creative and take you on a musical journey. I think we might even start a band before long!
I hope this new week will bring us good news.
I love you, my son.
Dad
PS: I’ve set up social network accounts for you.
Your guardian angels will be able to send you love there too.
Instagram
Facebook
Note that I’ve always hated the idea of exposing you on the networks and I’m still not sure exactly how I’m going to use them. But I think they can be useful later.
