Hello, son,
In the last few days, we had some good news that I forgot to share here.
You no longer need your corticosteroid treatment that you’ve been on for 7 months. The doctors decided to stop them because your blood test levels were good. This is another important step!
Now let’s talk about your schedule yesterday.
Like every day when you woke up, you took your medication (esio + domperidone + luftal), then your first morning meal of milk-based jelly that we prepare ourselves. You then received your care, then your second morning meal of fruit, then your respiratory physiotherapy, then your lunch consisting of meat and vegetables.
After all that, you took a short nap late in the morning.
Then your motor physiotherapist arrived. You had a motor skills session, and she also works on your breathing. You were a bit tired, you cried a little. To help you, she also gave you some Atrovent.
And after that, we went to the beach!
Indeed, Carole, your physiotherapist, suggested a few weeks ago that we organize an outing, and we loved the idea.
Let’s be honest, after everything we’ve been through, going out with you sometimes scares us.
First, because we’re afraid you might catch a virus, a bacterium, or something else. Second, because going out with a baby already requires organization, and even more so with a baby who has a respiratory illness and is oxygen-dependent. Everything requires more anticipation. We also have to travel with your oxygen tank, which, even though it’s aluminum, is bulky.
So, in our car, there was you, your mom, Carole the physiotherapist, and me.
In another car, Grandma Michelle and Grandpa Robert followed us in an Uber.
Once we arrived there, we went straight to the beach. You looked around everywhere as if enchanted.
We first looked for a place to sit, and finally, we settled on the sand.
And there, you discovered the sand. You put your hands in it and then wanted to put them in your mouth 🙂
Then we tried to make little castles, little sand pies.
We bought a small bucket just for the occasion.
Next, we wanted to introduce you to the sea.
I held you in my arms and dipped your feet in the water when the waves came in.
You cried a little bit, but overall, you weren’t scared.
You are truly incredible!
Most of all, you seemed to enjoy watching the sea, looking out at the open water, and watching the sunset too.
Your Grandma and Grandpa also had an excellent time. They are very happy to see you discovering life, and I think they couldn’t have wished for a better Christmas with us after what they went through in May when you were in the ICU.
Then we watched the sunset all together.
You observed absolutely everything with your big eyes. You even laughed from time to time.
Then, we went back home.
I must tell you, son, that this experience was wonderful.
We came home tired, but with stars in our eyes.
Thanks to Carole, we were able to leave the house and live a normal life for a moment.
A real life.
This gives us a lot of hope for the future, a lot of hope for 2026.
We hope to be able to go home.
We hope to be able to have this normal life that we want.
We hope to be able to get off oxygen.
And given your progress over the last three months, I sincerely think that will be possible.
I am very happy to have experienced this with you, son.
We have some beautiful photos that we published on Instagram, in a story.
A huge thank you to Carole for helping us organize all of this.
I love you.
Dad
