Done?

This is really strange to us. It is literally the first time since the beginning of April last year that we do not have something (and LOTS of somethings) scheduled in the next week. In fact, we now have NOTHING on our medical schedule until May. We are in a foreign land and are not quite sure what to do with it.

Today was a good example of "Advocating For Your Child." Rebekah had her kidney function test. Nearly an hour of watching her kidneys function under a CT type scanner while she was under yet another general anesthetic. We had asked and asked to have her central line pulled at the end of this test while she was still under but all we could get for the last 2-3 weeks was "we just can't get the schedules to work out" or "the surgeon is not available..." That meant another general anesthetic tomorrow just to pull the line.

Well, after Rebekah went under mommy and daddy went out to the fountain area where we like to sit. While there Rebekah's surgeon walked by and daddy got his attention. We asked him whether he had a moment to talk and he commented that he had lots of time, he was "just teaching" today.... Oops. We asked "how would you like to go pull her central line?" He was concerned that it was an emergency because it was infected or something but we explained no, it would just save a trip and another general anesthetic. It made good sense to him and he took off with his interns in tow to go take care of it.

Daddy had to go to the surgeon's office and get a consent signed - the surgeon's staff were not exactly pleased with him making his own scheduling on the fly - but it made sense to the patient and he was willing to do it. We thought that was TOTALLY great and the sign of a great doctor. It never would have happened, however, without mommy and daddy advocating (pushing) for Rebekah.

Rebekah is now free of her central line (still has her g-tube in her tummy.) She is free from that infection risk, from the daily maintenance and the traumatic dressing changes. In fact she can actually take a bath -- although it will remain to be seen how well that will go over after so long without being able to.

Help us out - what do "normal" families do with their time? It is a rhetorical question. But as an exercise in thought, , please look back on what we have had to do with ours over the last 11 months and compare that to what you are doing with yours. Are all of the things that are taking up your time really priorities or should you consider making some lifestyle changes so you can focus your time differently? We ask because we know it can be done. You too, if forced to undergo what we have would be able to do it. So the big question is - should you make changes to spend more/different quality time with your family before you are "forced" to or even worse, before it's too late?