Hello, son,
This is a bit of a raw message because I’m short on time, but I have things to share.
Big week coming up!
The week just before your first birthday!
And there’s a lot to do.
Today isn’t starting well.
Like every Monday morning, we weighed you.
And you lost 200 grams.
You’re back under 8 kilos…
And that worries us a lot.
We’re trying to understand why.
Maybe the new food tests, less caloric?
Maybe something else?
Maybe also the fact that you’re using less oxygen, even if it’s already very low?
The truth is, we don’t really know.
So we’re going to try other things.
We’re reinventing ourselves again.
We’ll try a different approach. Give more often, differently.
We’re moving forward a bit blindly.
This week, we have a lot of appointments.
Tomorrow we’re going to town.
Friday too.
Saturday we’re fixing the house roof which is falling apart (I’m exaggerating a bit)
And this morning, with this news about the weight, I won’t lie, I feel a bit down before even starting.
Yet, this morning, we had a great time together. Laughing in the night!
Anyway, let’s move forward. And I just received 2 emails!
A renowned French pediatric pulmonologist who approves the BO Community site and will share it with his patients!
And there’s something else too. Dad will probably participate in a conference of the French Association for Interstitial Lung Diseases in Children, via video conference.
That will allow me to talk about your illness.
To highlight BOCommunity.org.
To continue building connections.
Because that’s what’s most important.
Expand the network.
Connect with the right people.
And maybe also… prepare for the future.
Especially in France, if we ever return home!
Because I want you to also meet your great-grandmother Jeannine, your grandpa Christian, and everyone who supports you from afar!
So let’s keep hope and strength!
And we keep moving forward (I’m self-motivating 🙂 )
I love you, my sweet pea!
Dad
