Hello son
This weekend was quite stable.
On Sunday, we spent a lot of time together, and seeing you laugh did me a world of good.
Your favorite game right now is the towel. I hold it in front of your feet, hide behind it, and ask you, “Where are you, where are you, where are you?” As soon as I bring the towel closer, you give a huge kick with your two little legs to knock it down. And when you see my face appear from behind, you burst into laughter, which makes me laugh even more. We have a great time every time.
You’re also starting to roll over, but you get stuck on your tummy.
We also had another little “movie session” all three of us. We set you up in bed, just like last Sunday, and stayed together for about fifteen minutes watching the beginning of Minions 3.
Having you between the two of us was a simple but precious moment.
We also had some good news. The speech therapist told us you could start trying savory spoon-fed meals today. We tried sweet potato. You hated it. That happens. We’ll try something else.
Yesterday, your uncle Raphaël and your aunt Jacqueline, who is also your godmother, came to see you. Your aunt burst into tears when she saw you. She hadn’t seen you for two months. At the hospital, she often came to check on you.
It felt good to see people. Since we got back to the apartment, we haven’t seen many people. We live a somewhat military routine. We go out very little, and only for groceries or health appointments. And when we come back, showering and disinfection are mandatory.
It also reminds us that life goes on outside. The other day I went out and saw children without tubes in their noses. It seemed strange to me. I realized we’ve almost forgotten what normal life is like. I hope that one day we, you, your mom, and I, can go back to it and live like all other families.
Unfortunately, not everything is simple. Yesterday you had reflux, you cried, and your tube overflowed. It’s never pleasant and always complicates things a bit. But we’re doing our best.
Your mom and I have a lot of questions about NIV.
The specialist told us we had to keep the exact same setting. The real problem isn’t the setting itself, it’s the startup. The initial pressure is very strong, and it sends a violent blast of air to your face.
Before, we would start gently and then increase to the final setting.
As a result, every time we put you on NIV, you wake up suddenly. You’re sleeping less and less well. You’re getting more and more tired. And we’re worried. We’re going to contact her to find out what to do.
Today we should also get last week’s results.
I love you
Dad
