Notube Eating school day 5

Elodie’s weight dropped from 9.9 kg on Wednesday to 9.5 kg today. They are weighing with clothes on, so she is actually weighing even less. At home, she was 9.9 kg without clothes on in the morning. Luckily the doctor told us to give her a bit more food, so she doesn’t become weak. I hate to see that she lost weight, seeing her ribs, and flat belly just makes me feel awful. I am glad to hear that they won’t make her starve, will reset, or break her, which are a few comments we have heard from the hospital in the Netherlands. They are sensible and know what they are doing.

Elodie is exploring a lot and trying to eat different textures. Unfortunately not yet eating larger quantities, she is in the ‘sip and snack’ phase.

Elodie fell during play time and hit the floor quite hard. Her lip was swollen and it was bleeding, she was really upset. One of the therapists told us to go to Dr. Marguerite so she could check it out immediately. Good thing to be surrounded by medical staff! It was all right, just a bit unfortunate. We were scared that she would show less interest in food because of her big swollen lip. Luckily that wasn’t the case and she actually proceeded as usual.

We fell a sleep again during Elodie’s nap. While we didn’t feel that tired our body was saying otherwise.

At NoTube they don’t only observe the child, but take in to account the mental and physical well-being of the parents as well. It feels good to talk to professionals who are experts on these topics. Not being judged, and not being pressured into doing things which don’t feel right for us. After all what we, and the other families have been through this is a nice and safe environment, unlike the local hospitals which normally have a one size fits (not) all approach.

Doctor Peter Scheer gave me a special prune juice to help my constipation when we were discussing my health. I told them I was on Movicolon for years. It’s nice to see that they think along with everyone in the family. Today his wife, Doctor Marguerite Scheer, joined the medical round, she was taking notes.