Hello, son,
Yesterday was a great day.
We left Fortaleza to go home.
The last time the three of us were here, it was very brief.
We left this house last March 28th with your mom to go to Fortaleza to prepare for your arrival. Then we came back for two days with you, and then on April 27th, if I’m not mistaken, we had to go back to the hospital.
So it’s been almost a year since we truly lived at home.
It feels strange to be back here.
It’s nice, obviously. But at the same time it’s strange.
As if two lives are merging. The life before and the life today.
We know the walls, but we don’t quite feel completely settled.
The trip yesterday went well.
We had prepared everything in advance.
An ambulance from the region came to pick you up right after your favorite motor physiotherapy session with Carole, and you stayed with your mom the whole way. She held you in her arms because there wasn’t really a suitable car seat in the ambulance. You didn’t cry and you watched her almost the entire time.
On our side, your nanny Fabi and I drove back like crazy to organize everything before your arrival.
The car was full, really full of things. There are still some items there that I’ll have to go pick up next Monday for a third and final trip.
So, we’ve been home for 24 hours now.
Your night was split into two parts. The first with your mom. Apparently, you didn’t sleep very well. Then the second with me starting at 2 AM. And I thought you slept quite well then.
Your saturation was a little lower than usual. That made us a bit anxious, and we had to increase the oxygen a bit. We’re not sure if it’s just you adapting to this different environment.
Another mom of a child with BOPI just told us the same thing happened to her when they moved.
We also received an official email from the health insurance saying they don’t cover us in the area where we live. So for now, we’re not sure how things will work out for certain equipment. We knew that, nothing new… We love them 🙂
But there’s also a surprise.
Here, in the countryside, the public system supports us much more than we imagined. They provide us with oxygen. They provide us with medical equipment. They provide certain medications. They might also provide your specialized milk. They also handle vaccinations.
And all of that for free.
It’s almost unbelievable! Responsive, efficient! So good!
Today, for example, a doctor came to the house with several nurses and caregivers to do an initial check-up. Tomorrow, a lady is coming for vaccinations. Next week, we’ll see a pediatrician.
You also had your first motor physiotherapy session today.
This physiotherapist is very experienced. She even treated Dad’s back before. The session went quite well, and I think it’s going to be great.
This part is not financially covered and will be among the expenses we will bear. There will also be a respiratory physiotherapist coming starting tomorrow.
For the parts not covered we’re still moving forward on other fronts, and it’s soooooo long!
Your mom learned basic techniques and now knows how to use the mouthpiece and the TR3 that we do almost daily.
Today you also had a bit of a fever at two points during the day.
That worried us a bit. We think your body just needs to adapt. The climate isn’t exactly the same as in Fortaleza. It’s more humid and a little warmer here.
We’re running the air conditioning to try and maintain a stable temperature.
In the house, for now, it’s a bit chaotic.
We have stuff everywhere from the apartment. We’re trying to organize little by little. We’ll probably have to reorganize your room because with all the medical equipment, we’re running out of space.
We’ll find a better arrangement.
Fortunately, your nanny Fabi agreed to follow us here to help for a while. Without her, it would be much more complicated.
Today you were in a pretty good mood. You’re smiling, you’re laughing. And that’s always the best sign in the world. I love making you burst out laughing.
What’s most striking here compared to the city is the silence.
A true silence.
In Fortaleza, we lived right across from an intersection, and there was always noise.
Here we hear birds, cats, chickens, dogs.
There are also a lot of flies and mosquitoes. That’s part of the countryside.
It’s like the pressure of the city is easing a bit.
There are fewer professional visits during the day. You can sleep whenever you want. You’re no longer forced to follow a schedule dictated by medical appointments.
Little by little, things are moving forward.
We need to stay calm.
And most importantly, enjoy this moment of victory.
I love you, my little potato.
Dad.
