The most common advice is to take parental leave so that :
- you can get to know your baby and his reactions better,
- you can organise yourself in your family environment,
- you can familiarise yourself with the “techniques” used for his treatment: supply of food/medicine, preparation of bottles, insertion of the nasogastric tube, use of the enteral feeding pump (if necessary), insertion of urine bags….
- and above all so that you can gradually acquire knowledge about his illness and its treatment and thus gradually reduce your concerns or questions.
In France : You can apply for an Allocation Journalière de Présence Parentale (AJPP) if you stop working occasionally to look after your child as part of a parental presence leave if you are employed. In this case, you must provide a detailed medical certificate, drawn up by the referring doctor, and a special AJPP form issued by the CAF, indicating the need for restrictive care and your presence with your child. These documents should be sent to the CAF, which will forward them to the Medical Officer of the Caisse Primaire d’Assurance Maladie, who will decide on your application.
It is necessary to plan for them. Make sure you have adequate food/medication supplies for the time of your holiday.
Inform the service provider so that you have all the necessary materials.
Depending on your destination, ask your referring doctor if he or she has a local correspondent who can be contacted in the event of a “decompensation”. Always carry with you the emergency certificate, the emergency and semi-emergency diets, as well as the products of the emergency or semi-emergency diet that will allow you to be taken care of at the local hospital quickly.
On a larger scale, there are very few ‘holiday camps’ where diet and illness can be managed satisfactorily. Ask your referring doctor for advice.
All sports can be practised without excessive effort. Let him choose the sport that appeals to him and at his own pace! The diet can be adjusted before starting to practise sport.