My advice: keep a notebook/journal of your child

In case someone's reading this who has a child with medical issues, I'll sometimes share advice that I think might be helpful. Since the day Little T was born with complex medical issues, my husband started carrying around a notebook. We record when we meet with someone, an outline of our discussion and also any changes/observations about our son. Now that we're home more, I've switched to an online journal. For us, it's simply a matter of making sense of it all. We have a lot of information thrown at us, and at times we're incredibly sad and stressed. Without a written record, we literally couldn't remember what was said to us, or what happened a few days ago.

In the beginning some of Little T's doctors and nurses commented on it, and it seemed to impress them. It helped us seem better prepared and more involved parents. I think this may have contributed to better treatment, since so far we're pretty happy with the level of care we've received.

Also we now have a pretty good record of his history. Sometimes we go back and look at how bad things were to see how far we've come.

I also use an electronic calendar with all his apts, reminders about following up on lab results, ordering medical supplies, taking regular photos etc.

If your child has a physical condition, I also recommend taking photos or video at regular intervals. Many doctors don't do this as normal part of their practice, but we've found it really adds a lot of useful info. If understanding size is important in your photo or video, it also helps to take it with a reference object. In our case, we take a photo with our child next to a DVD case.