Hello, son,<\/p>\n\n
An update on the situation.<\/p>\n\n
Your breathing has been quite stable over the last few days. You need a low dose of oxygen to be comfortable. <\/p>\n\n
We’re gradually trying to take you off the oxygen again.<\/p>\n\n
Also, for the past few months, the hospital and the insurance company hadn’t been doing what was necessary to send a respiratory therapist on weekends.<\/p>\n\n
After many complaints and requests, since it was in the contract they signed, a new person came this weekend and the connection has been quite positive. He is also an osteopath and has a slightly different, interesting approach that seems to be working. <\/p>\n\n
We are still battling to get you to eat.<\/p>\n\n
Yesterday I weighed you, and you’ve lost weight again…<\/p>\n\n
Generally, you eat three spoonfuls then refuse the rest. We alternate with spoonfuls of liquid (water, milk) to try and get you to consume more. Sometimes it works, sometimes it doesn’t. <\/p>\n\n
We tried very high-calorie dishes to reach your goal of 1000 kcal per day, but it’s almost impossible. We tested foods alone, fruits, vegetables, a\u00e7a\u00ed. <\/p>\n\n
We are really struggling to help you gain weight. Looking at your growth charts, it is clear that since you switched from cow’s milk protein-based formula to a specialized one, your growth has slowed down drastically.
Your illness makes you consume a lot of calories, and you don’t want to eat enough to compensate.<\/p>\n\n
We’re trying everything, but it’s really difficult to manage. We want to avoid a gastrostomy, but you’re not helping us much… <\/p>\n\n
Let’s keep trying!<\/p>\n\n
Following our visit to the neurologist, we followed her advice and restarted OT sessions (occupational therapy). You have 2 per week. The goal is to help you discover new textures, especially food. <\/p>\n\n
Speaking of which, yesterday we followed one of her recommendations: putting sagu (small tapioca pearls) in water and letting you play with it. <\/p>\n\n
You loved it and got it everywhere! And we had a good laugh. <\/p>\n\n
That’s life! <\/p>\n\n
We can’t wait to be able to do this in our house! And for you to enjoy the garden and go outside! <\/p>\n\n
First of all, we thank Le Progr\u00e8s for highlighting our story and the association.<\/p>\n\n
We also thank your grandma and grandpa, who continue to communicate about the association to raise awareness about your rare disease and collect funds to help us.<\/p>\n\n
The article was published today:<\/p>\n\n Note that there are a few errors, particularly one that says your great-grandmother from Marchampt is my mother’s mother. That’s incorrect: she is my father’s mother. It’s not very serious, but I’m noting it for you so you understand the error when you’re older and read this text. <\/p>\n\n Also, they mention an ECMO found in Salvador. There was a misunderstanding: the ECMO was indeed from Fortaleza, but a doctor on the team was from Salvador. But, it’s not very serious. <\/p>\n\n![\"20260216](\"https:\/\/hopeforgabriel.com\/wp-content\/uploads\/2026\/02\/20260216-leprogres-une-778x1024.jpeg\")
![\"20260216](\"https:\/\/hopeforgabriel.com\/wp-content\/uploads\/2026\/02\/20260216-leprogres-article-1-758x1024.jpeg\")