Hello, son,
These past few days, you’ve been doing quite well.
When I think about it, your progress since leaving the hospital is incredible.
You’re becoming more and more alert, and growing bigger too.
Recently, you love it when we play Eiffel 65’s song, Blue, and when we sing Dabedee Dabedaa, you burst out laughing.
For us, these daily moments of happiness are extremely precious.
Food-wise, you’re accepting to eat better and better.
The food is less liquid, and about 75% of the time everything goes well, but sometimes it causes reflux.
You discovered dragon fruit, or pitaya in Portuguese.
Quite a funny moment.
The pitaya is purple when it goes in and also when it comes out…
Much to the delight of your mom, who loves analyzing your diapers.
Speaking of which, we also received your first potty yesterday! We thought, since you often struggle to go to the bathroom and we have to position you for it, why not teach you to do it like the big kids already. A new adventure begins, haha!
Regarding water, it’s still more complicated. We’re trying with a thickener (ESPEFOR), which allows you to drink more easily, but it seems to make your stomach swell.
This point is still causing us problems.
The more liquid the water is, the more you suffer from reflux and thus breathing problems.
If we use a thickener, you have stomach problems, which also leads to breathing difficulties.
We still have work to do on this point.
You have two little teeth coming in at the front. We try to brush them, but for now, it’s not easy. You close your mouth and cry, not wanting us to touch them.
For oxygen, we’re continuing the training.
Every day, we take you off oxygen for two and a half hours in the morning and two and a half hours in the afternoon so your body can get used to it. Your saturation isn’t always perfect, but overall you’re managing quite well. You fluctuate between 90 and 98 most of the time. Your retraction remains strong, but according to specialists, it’s normal and will improve over the years if we continue to follow the plan based on physiotherapy and NIV.
You had an echocardiogram to check for possible pulmonary hypertension.
Your mom took you. The doctor wasn’t very pleasant, but he performed the exam.
When we sent the results to the pediatrician, she confirmed that the work had been poorly done.
Important checks were not performed, and the images are not available.
As a result, we’ll have to start over. The kind of professionalism we just love…
For your information and so you know the family history, your great-aunt Annie suffered from primary pulmonary hypertension and had a heart-lung transplant at the age of 18. At the time, when I was born, it was a huge battle led by your Grandma Michelle, your great-uncle Roger, and your great-grandparents, who organized events all over France to raise donations and allow her to be operated on in London.
That said, your case is very different and unrelated. But sometimes, certain medical terms resonate strongly.
You also had a visit from the ophthalmologist.
When you were in the ICU, we were warned that after several days with low saturation in intensive care, exposure to high oxygen levels, and ECMO, there could be visual impairments.
And according to her, everything is going very well. You see very well. That’s excellent news!
We also had a visit from Tio Patrick and Tia Cris. They brought us things from France, including a medication difficult to find in Brazil, salbutamol in an inhaler.
On that note, a huge thank you to Aurélie, from the Cercié pharmacy, who helped us at the last minute. Cercié is located in the region where Dad grew up. Tio Patrick and Tia Cris drove through there for the occasion. It’s a small world!
They also brought us some equipment for you and a piece of cheese to lift our spirits. A big thank you to them!
We’re still making progress on the possibility of returning home one day.
Your mom is working hard on it. It’s not finalized yet, but it’s moving forward.
On Instagram, we continue to communicate, and the #MoveWithGabriel movement is starting to motivate more and more people to be active.
You know, son, when a first attempt works, you have to put all your energy into it.
So we’re going to continue in that direction.
(The MVP principle in startups that I would always recommend you apply in your projects)
Aside from that, everything is proceeding as planned.
We’re rolling out the plan with faith, with our 2026 goal in sight: a normal life.
I love you.
Dad.
