Hi, my boy,
Summary of the last few days.
(when will there be a soap opera?)
Food, again and always
When it comes to eating, it’s still a crusade.
Now it seems to work better with your mom.
With me, it’s worse.
And with the girls who help us, it depends.
Honestly, it’s very unpredictable.
We still have to pretend we’re giving you water so we can give you food. A little trick to get around your refusal, but it irritates you in the long run.
Your weight has been more or less the same since January 14.
My personal theory is that the problem may come from the fact that we can’t give you a bottle because of your breathing issues, and because you don’t know how to drink from a bottle.
We have to make up for it with a spoon, with large amounts. And for you, it may be too much. So you push us away. And in a way, that makes sense. Your body may simply be telling us to stop. But that’s my theory.
After the virus
Respiratory-wise, this latest virus isn’t severe, but it leaves its mark. A sort of sore throat with a lot of mucus. We can hear it when you breathe. We can see it when you cough. Once again, you have a long list of medications, nebulizers, all the usual arsenal.
For us, it’s heavy to put you through all of this. Every time you cry, it triggers a loop of anxiety and negative thoughts in me. And it’s even worse with fatigue and stress. The good news is the psychologist gave me some “tips and tricks,” haha.
Immune workup
This week, we also received the results of your immune workup.
The good news is that no allergies were detected—no dust mites, no mold, and no animals. That will help us in our day-to-day life.
Your immune system is very active. It’s not a collapsed system. It’s not a disaster. It’s a system that’s fighting. Your body is working hard, especially the part linked to your lungs.
Overall, your antibodies are within the normal range, even if some are on the lower side. Nothing alarming. But nothing that allows us to let our guard down either.
You’re not protected against hepatitis B yet, and you don’t have immunity to rubella. These are things we’ll go over with the doctors, calmly.
Stranger Things in the apartment
Since we’ve been in this apartment, we regularly hear strange cracking noises.
We thought it was the fridge.
On Wednesday evening, a piece of tile in the room where you play on the floor popped up. Then the next day at 6 a.m., there was a kind of explosion.
You were eating with Tia Nil on the balcony, and I was in the office.
I thought you had fallen. She thought I had fallen.
When I got to the living room, the tile floor had burst upward. As we walked, the tiles were breaking under our feet. Personally, I had never seen that before.
But in terms of construction, I think Brazil will always surprise me!
(and at the same time, in Europe, we complain about standards, paradoxical, isn’t it?)
According to the administration, it’s a problem with poor quality sealant and poor quality tiles. Everyone knows about it, including the owner. This has already happened in many apartments in the building.
We reported from the start that the tiles were coming loose in your room and in ours. The owner is offering to replace everything.
But… it’s impossible for us to do construction work with you here. We have to avoid any dust for your lungs.
We’re stuck. We can’t use the living room anymore. We’re trying to find solutions, but we’re clearly financially limited too.
And since problems never come alone, your oxygen concentrator broke down the same day. Perfect timing. Thankfully, the company that provides the equipment through the insurance was very efficient and replaced it.
At the same time, your uncle Rafael did an incredible job at the house 4 hours from here. He reduced the humidity and protected the wall of your bedroom that was exposed to the weather. A huge thank-you to him. He really came through.
So you might be thinking:
Why not go back home?
Because nothing is simple. We have to make sure everything is compatible with your health.
Every decision has a cost. Financial. Logistical. Medical.
We’re facing a delicate situation. We weigh every risk. We take the advice of the professionals supporting us. We hope to settle on a solution by the end of the week.
The war continues…
But in this battle, you can be sure of one thing: we love you, my little potato.
Dad.
