Hello my little Bibi,
When you are older and you read these articles again, you will probably wonder:
“But what was my dad doing?
Why did he stop writing for weeks?”
Well, it’s simply that life goes on, there is a lot to do, and sometimes I take less time to come and write here. And yet, we live through things every single day!
So, what am I going to tell you about today?
Overall, you are doing well. You still have all your treatments and your medication.
Part of your days is still devoted to all of that, but your progress is rather positive and it feels good.
Last time, I told you about the possibility of doing another pulse therapy (a high dose of corticosteroids). In the end, after getting several opinions from different professionals, the decision was not to go ahead with it.
It seems there would be more risks than benefits in your current situation. So we decided not to take that risk. Your general condition is fairly stable and we believe this is the best decision for now.
As always, we try to make the fairest decisions for you, even if it is not always obvious. Even more so when we are talking about a rare disease, where even the professionals don’t always know what to do.
On the development side: you are almost 19 months old. You don’t walk on your own yet, but you can now walk while holding just one hand. That’s already great progress! Your physiotherapist Luciana helps you a lot with this!
You also have other professionals who come to see you, in particular to work on your breathing and help you catch up. We are very lucky to be able to count on them. Thank you to Tathiane, Andreza and Lizandra who, together with Luciana, make a great team!
As for language, you still don’t say “papa”, haha! But you are also starting to make sounds like “ma”, “ta”, “ba”, “vo”. In short, you are slowly moving forward with your first babbling and it is really funny to hear.
For a few days now, you have even started playing the flute! And that is excellent news. Besides having fun, it lets you work on controlling your breathing. Which goes to show that sometimes we manage to mix business with pleasure!
You have also become a big fan of DJing with Dad. We sometimes play together on the turntables and you love it. We also go cycling outside now, and we even go to the beach to pedal together.
In short, you are growing, you are discovering lots of things, and we are starting to get back a life with more small pleasures and moments of freedom.
Of course, we are still very careful about viruses, but overall, our daily life is much more pleasant than it was a few months ago.
And we are certainly not going to complain about that!
And then, there is everything we are building around your disease.
The various initiatives we are putting in place to help other families and raise awareness of bronchiolitis obliterans are gradually taking shape.
The BOCommunity website is starting to bring together new families. With an association in the Netherlands and a mum in England, we have launched several initiatives to raise awareness of this disease, inform healthcare professionals and try to move things forward.
All of this is progressing slowly but surely. The site is growing, new parents are joining us and more and more people are getting involved.
It is encouraging. And above all, it gives hope. Because if your story can help other families feel less alone, and help professionals better understand this disease, then all this work will have been worth it.
I also recently picked up an idea launched by an American and created the website Clima dos Vírus, which displays a map of viruses in Brazil, almost in real time. The idea is to help people who need to be particularly careful about viruses to know what is circulating around them.
Mum and I are doing fairly well too. It is not easy every day, especially with work and everything we have to manage alongside it, but we are moving forward slowly but surely!
I may not have told you about her very often, but for a few months now, you have also had a wonderful nanny, Tia Marli. She comes to the house and takes good care of you. You adore her, and we love her very much too. She has become an important person in your daily life.
This week, we also had a lovely reunion.
Your grandpa Manoel and your grandma Maria came to visit us. It had been more than a year since they had last seen you. The last time was at the hospital.
So of course, we were so happy to see them again!
You were very happy to see them. You especially love dancing with your grandpa and grandma. You blew them kisses and you looked so pleased to have them close to you.
They stayed for almost a week and it was beautiful to see all those shared moments. You have grown so much since their last visit!
They told you over and over again how much they love you. I think they were especially happy to find you with all your energy and all the love you gave them.
Sadly, your grandma has some difficulties with her memory because of an illness called Alzheimer’s. It is something that is part of her daily life, but it does not stop her from enjoying these beautiful moments with you. And I believe those few days together did her a world of good.
They drove a long way to come and see us. Your grandpa took the wheel and they made the whole journey simply to spend time with you. And like all good grandpas and grandmas when they come to visit, they never arrive empty-handed! So we also enjoyed plenty of good things to eat!
That is what family is about too! I hope you will get to discover more of it, even though we live far from everyone for now.
I sincerely hope you will have many more opportunities to see them again. And I hope that by writing these few lines, you will be able to keep a trace of these moments and of them, when you are older. I am also taking photos and videos so that you can relive these moments and find all these beautiful memories again.
I am sure your mum will tell you plenty of stories about them too, when you are older.
And then, more good news: we learned that Papy Robert and Mamie Michelle will be coming to see us in January! So you will get to see them again as well. That makes us very happy.
There you go, my little Bibi. I just wanted to take a few minutes to tell you all of this.
You are doing well, you are growing, you are discovering the world in your own way, and every day you give us new little moments of happiness.
We are very proud of you.
We love you enormously and we hope to share more and more things all together. Walks, bike rides, music, days at the beach and plenty of other adventures we haven’t even imagined yet.
Keep growing at your own pace, my little Bibi.
I don’t call you Potato anymore, even though you have finally made it past 10 kilos. Well done, Potato! Haha!
I love you.
Dad