Hello Son,
I said I was stopping, but your mom told me to keep going, so I’m keeping at it!
The news is pretty much the same and you’re doing quite well—let’s say stable!
Nutrition
Stable, we’re on a plateau.
We are well supported by Yaëlle from AFPIE in France and her dedicated InfoSNG service, and I can say it’s a huge support (especially for me in French!).
Lung
We had a new appointment with your great physical therapist Evelim from Sao Paulo, who adjusted the treatments, especially since you accept the NIV 6 hours a day now.
We’re also doing EPAP with you now, which you used to hate, and it seems to be having a very positive effect!
NIV + EPAP: it’s a real game-changer for your respiratory exhaustion at the end of the day!
Your mom has become a respiratory therapist. She understands all the terms!
Blood test
Three things to remember, without the jargon:
- Your adrenal glands are running slow. It’s likely an effect of your corticosteroid treatment for your lungs. Nothing serious, but we’re keeping an eye on it, especially if you get sick. This is the main point we’ll show the endocrinologist at the next appointment.
- Your defenses are a bit low in the lungs, but your immune system is solid. You react well to vaccines and everything that should be there is there. It looks like a baby thing that settles itself over time. We’re just staying cautious to avoid infections.
- You’re growing slowly, but that’s normal. No hormonal issues, no anemia. Your body just spends a lot of energy breathing, so the rest goes at its own pace.
Insurance and the joys of Brazil
We had some good news from the Brazilian insurance.
This week they accepted all the reimbursements for the physical therapy for the first time.
Considering it’s our biggest monthly expense! It’s a relief.
At the same time, the judge ruled in our favor.
Your mother has spent hours on the phone over the last 2 months and the lawyer is putting pressure on them!
Could it be a victory?
Homecare hasn’t been officially admitted yet, so we’re not getting ahead of ourselves. And all the other care isn’t necessarily covered.
But I think it’s a good sign. Apparently, there’s an 8-month delay between a judge’s decision and full implementation.
It’s still incredible when you see the insurance premiums we pay…
Health insurance in Brazil really deserves some good reforms!
A good idea for the Brazilian people would be for right-wing, left-wing, and other political parties to donate the millions they receive from health plan executives during elections to public healthcare!
So, without a transition, this allows me to thank once again from the bottom of my heart everyone who has supported us and still supports us with donations!
Our expenses are still high, but if the insurance finally does its job, we should be able to breathe a little, and then I’d like to use the next donations for research, but I still don’t know how to go about it!
Which brings me to Grandpa Robert’s challenge!
Grandpa Robert’s challenge and the impact of BOCommunity.org
Your Grandpa Robert is all in for his August challenge, and I’m trying to highlight his work on the internet as best as I can.
I can already say that this challenge is positive for your illness because the communication has already brought us quality contacts in France and I hope to have a big impact on the communication of this rare disease. Partners have joined us. Very soon all this should be relayed in the media.
Also, this week, a mother of a child also suffering from PIBO left a little message that warmed my heart on LinkedIn.
She discovered the site https://bocommunity.org a few months ago when she learned the diagnosis, and your story and our sharing helped her. We exchange regularly, giving each other advice.
Recently, her son also came off oxygen. What a joy!
Son, you don’t know it yet, but your strength to live, linked to our actions, inspires other families to overcome this disease! I’m happy that people can find this platform to meet other families, find answers to their questions, and professionals. I hope this platform can help many others. In any case, it’s what I would have dreamed of finding the day we were told your diagnosis...
Daily Life and Future
I just re-read the article from that cursed date and I wasn’t far off about the short-term future. I hope I’m right about the long term.
The pandemic mode we’re imposing on ourselves to avoid viruses is socially heavy for us.
This week, I had to go do some chores in town and I caught myself feeling anxiety at the thought of leaving the house… and I know your mom isn’t doing very well either.
We’re so afraid of bringing a virus back to you and losing everything we’ve gained, all this time spent trying to make sure you breathe better…
We know, for example, that an “influencer” recently came to the tourist village nearby and her child caught RSV. The whole family was sick. In short, news that doesn’t reassure us… when we know the damage a second virus can do to little lungs like yours.
We tell ourselves we have to get past the 2-year mark, and after that we’ll free ourselves up a bit more.
My secret dream: to FINALLY be able to go to France so you can meet all your family there, including your Grandma Jeannine and your Grandpa Christian.
I feel so guilty that your French family can’t see you…
There you go, my little potato.
You’ll be waking up from your nap soon and I have plenty of things to do before then, so I’m off!
I love you,
Dad
PS: your mom just brought me a cake with a good coffee, it’s Father’s Day in France 😉
