Hello, son,<\/p>\n\n
A full update on how things are progressing.<\/p>\n\n
Yesterday, you had a lung scan.<\/p>\n\n
We went to Acara\u00fa, to a new private clinic\u2014top-notch!<\/p>\n\n
Brand-new equipment, hardly anyone there, and skilled staff. We just had to insist that some people wear a mask, because we don\u2019t mess around with that. But apart from that, everything went really well. <\/p>\n\n
They lightly sedated you, you were a bit groggy, and we got the images.<\/p>\n\n
Now we\u2019re waiting for the doctor\u2019s official report.<\/p>\n\n
We\u2019re starting to understand a few things by looking at the images, but we\u2019re not professionals. So we\u2019re waiting for a real diagnosis… <\/p>\n\n
What\u2019s certain is that we can see the after-effects. Your lungs were affected. <\/p>\n\n
But clinically, you seem to be compensating.<\/p>\n\n
Everything we\u2019ve been putting in place for months is working. Physio twice a day, the exercises, the machines, the medication, all that discipline\u2026 it seems to be paying off. <\/p>\n\n
Glory to action!<\/p>\n\n
You\u2019re breathing without oxygen more and more often, sometimes all day.<\/p>\n\n
The goal now is simple. Keep going. Protect. <\/p>\n\n
Your lungs can keep developing until around age 8.<\/p>\n\n
So we\u2019re playing the long game.<\/p>\n\n
And if we have to live shut in, control every entry, avoid every virus, then we\u2019ll do it. Without hesitation. <\/p>\n\n
We\u2019ll adapt. We\u2019ll create our own world. <\/p>\n\n
This is more complicated.<\/p>\n\n
It\u2019s hard. And I think we share some responsibility. <\/p>\n\n
We delegated that part, and we lost control.<\/p>\n\n
Today, it\u2019s actually what worries me the most.<\/p>\n\n
For several days now, I haven\u2019t been able to get you to eat in the morning.<\/p>\n\n
It was the only meal I gave you; the rest is the nanny. And your mom when the nanny isn\u2019t there. <\/p>\n\n
Before, it was difficult but possible. Now it\u2019s blocked. You refuse, you keep your mouth shut. <\/p>\n\n
The nanny manages to get you to eat. She really is doing her best. <\/p>\n\n
But there\u2019s no pleasure anymore. You eat distractedly, looking elsewhere. We have to make noise everywhere to get you to open your mouth and slip the spoon in. Despite all the medications you have to swallow for reflux (esio, domperidone, sucrafilm, famox, luftal). <\/p>\n\n
It\u2019s not natural anymore. And the situation is getting worse. <\/p>\n\n
It really bothers me.<\/p>\n\n
Because eating should stay a pleasure, not a fight.<\/p>\n\n
Otherwise, you risk developing a complicated relationship with food.<\/p>\n\n
And above all, you need it. To grow, recover, and help your lungs develop. <\/p>\n\n
Today, I decided to take back control.<\/p>\n\n
I\u2019m going to test, understand, adjust.<\/p>\n\n
And if we can\u2019t manage it, we have a plan B: the G-tube.<\/p>\n\n
We need to aim for the long term and face this problem that scares us. <\/p>\n\n
We don\u2019t want it to come to that. But we won\u2019t let the situation get worse. <\/p>\n\n
We\u2019re also planning a return to Fortaleza to examine your esophagus with a camera.<\/p>\n\n