Hello, son,
Last week, the nanny wasn’t there. So for the first time since you left the hospital, the three of us found ourselves alone at home for 7 days. That had never happened since you left the hospital. Of course, the physiotherapists still come by during the day, but otherwise it was just us. And it did us good. Having someone in the house all the time, even if we understand why, is exhausting. This time, we were able to breathe a little.
On your side, you’re still making great progress with your breathing. You don’t need oxygen anymore, and you now sleep on your own in your room. And you sleep well!
But food has become the big issue.
For about two weeks now, it’s been very hard to get you to eat.
You don’t want to eat anything that looks like baby food anymore.
The only thing you accept a little is milk. But only in small amounts, and it causes reflux. So even that is difficult.
On top of that, you’re interested in what we eat. You come and pick at our plates, you nibble and spit it out. But it’s nowhere near enough calories, and you’re losing weight. And that worries us a lot…
We had an appointment with a specialist in France (Yaëlle, whom I met during the last online session). For now, she prefers to wait before considering a gastrostomy. She suggested perhaps going back to a nasal tube for a while to give you some energy and jumpstart your appetite. She also gave us a technique to desensitize you, because she thinks you have a sensitivity issue. This isn’t the first time we’ve been told this or paid specialists to help us with it. However, she gave us a technique that no one else had ever shown us. So we’re going to try it… especially since she wants to train us and give us that autonomy. And that’s cool!
Today, for every meal, your mom and I do it together. It takes about an hour each time, five times a day. It takes a huge amount of time, it makes everything else harder—work, planning—and it also creates tension…
It’s clearly the hardest part right now. And it’s really crushing our morale…
But we keep trying.
I love you, my little skinny potato…
Dad
