Hello, son,
A few updates from this week.
Weight and Food
On Monday, you’d lost weight again. But I think it’s temporary. You’re eating a lot more than before—we’re on the right track!
We had another appointment with the specialist from France. She gave us some new exercises, including one that’s still difficult: massaging your gums to desensitize them and help you with that.
Lungs
Your breathing has been a bit worse these past few days. No need for oxygen, even though your saturation sometimes drops to 88 for a few minutes.
A few possible causes: stopping Fluimucil and Montelair after the appointment with the pulmonologist, allergies, humid weather?
According to the physios, nothing abnormal. But of course it still makes us a bit anxious to see you getting out of breath.
We’re going to start using a high-flow machine we bought last month, in addition to the NIV. According to the physios, it’s wonderful and it’ll help you be less tired during the day.
By the way, Lumiar devices cost 10 times less than Philips devices if you live in Brazil. It’s worth it!
(It’s funny—sometimes I feel like the physios are much better than the pulmonologists. At the same time, they’re the ones on the front line every day.)
Mother’s Day
Sunday was Mother’s Day. For the first time, we celebrated it all three of us.
Last year, you were at your worst.
We thought about going to the beach, but the weather wasn’t great, so we stayed home.
You made a drawing for your mom, signed with your hand dipped in paint!
Our Lady of Fátima
Your mom took part in the Our Lady of Fátima procession on the 13th. She walked in the street with the village’s religious community.
It was also the anniversary of your ECMO last year. The kind of anniversary we’d like to forget, but can’t.
For context (I’m not exactly knowledgeable about religion—my thing was Club Dorothée): Our Lady of Fátima is a Marian apparition that took place on May 13, 1917, in Portugal, to three shepherd children. Since then, every May 13, processions are held in Portugal and in all countries with Portuguese influence—Brazil first and foremost. Our Lady of Fátima is strongly associated with prayers for healing and for the protection of children.
That this date fell on the day of your ECMO is no coincidence—the doctor in charge of you was counting on it.
Life
Aside from all that, you’re still an amazing kid.
You give kisses and cuddles, and you love messing with your new cactus that repeats what you say.
Not much more to say.
As they say, no news is good news!
I love you, my little potato.
Dad
