If there is one key element that underlies all others, of caring for such a devastatingly ill child then PREVENTION is it.
In order to keep Segev around this long what has been essential is recognizing in advance elements that can negatively impact on his well being. Recognizing signs early on and having foresight as to the problems that lie ahead.
Awareness is something we all have in different measures. That is why we need to rely on a large number of people to look at the physical state of our children, catch several angles and opinions.
This can be confusing of course, even misleading as well. Once Again each person has to decide for themselves how much they can do but the focus I beleive should be on the daily environment of your child, where he spends the majority of his time. At home or in an institute, daycare or a mixed bag of the above, running around getting treatments, hospital stays.
Even in Hospital your child's treatment routine should be approximated-with little to no compromise. I believe hospital staff should accomodate you, not the other way round.
Paying attention to nuances is critical, whether it is body language, signs or symptoms, the main caregiver should pay close attention to the slightest changes and reactions.
Is this asking a lot, of the caregiver or parent? No it is not asking a lot, it is asking too much. Honestly it is. No matter what level of involvement you have with such a child, for any one person it is too much. It must be a team effort but it is my sincere belief that if there is one person who will take on themselves the responsibilty, even if not to do actual treatment but rather to help coordinate treatment, then paying attention to detail becomes viable, realistic.
Without a superhuman effort to pay attention to detail, little progress can be made. In an ideal situation the main caregiver is the parent but this is usually not the case. Even if you are lucky enough to have a large support network of caring medical staff, knowledgeable friends or family, organized treatments, it is still necessary to coordinate everything into a big picture.
This can slowly take shape; in reality there will be a doctor, most likely neurologist who will be the "coordinating" official. Understandably such a neurologist will be eagerly accepted as an authoritative figure who is there to help.
Unfortunately his knowledge is extremely limited, pertaining only to his field and the superhuman endeavour of trying to care for an EMCHC is way beyond his abilities.
For those who already have been taking care of a child with massive psycho motor retartdation, uncontrolled epilepsy and a host of pulmonary and intestinal or other internal problems, difficulties with contractures of muscle and ligament, blindness, tube feeding, life saving surgeries, central apnea, inborn malformations of the body, devleoped deformations, paraplegia, mechanical breathing difficulties or, as is the case with my son Segev, all of the above, I can say with conviction that attention to detail, perseverance, study and a coordinated approach will give results.
The process of giving your child a reasonable quality of life is the goal. How much of that you achieve should not be as important as the knowledge that you were able to do as much as possible towards his well being.
My son Segev is an exception because caring for him has given a measure of success and he survives well beyond the known possibilities or statistics. Most will not be able to see their child reach 12 and some will question just how right is it to maintain their "well-being" so forcefully; but this writing is not for those that question but rather for those that do not.