Andrew has an artificial opening in his stomach where his Dialysis tube exits his body :

 We go out of our way to keep it protected, we have to.  Our nurses call it his “life line”, which sounds so dramatic, but essentially it’s what it is. So as you can imagine we have “RULES”  to follow as far as keeping it clean and sterile.  Like, we change the dressing everyday. First we clean the area using betadine swab sticks, apply some gentamicin cream, two 2×2 gauze pads and then cover it all with tegaderm.  He wears an elastic mesh belt thing around his waist to keep his “tube” close to his body so that it doesn’t get tugged or dirty and he’s NOT allowed to be submerged in water.  Like he can’t take a bath ( he showers !) or go in a pool, lake or ocean.

We had a freakishly HOT weekend. Like 96 degrees and we don’t have air conditioning  … most homes in our area don’t because we live near the coast. It’s not suppose to be that HOT.  So we were forced really to bust out the slip n slide.  And Andrew LOVED it !

I totally justified this.  He was in moving water, his tube was covered and it was only for like 10 minutes at most.  And I obviously changed his bandage the minute he was done.  He had the BEST time ! He was laughing and smiling and splashing …   for those short 10 minutes he wasn’t a baby with kidney disease on dialysis.  He was just a boy enjoying his day

And for THAT, I’d break the “rules” again!

Sooo, when I started this here blog, I had nothing but time.  I was in the middle of my VERY HIGH  RISK pregnancy and after my first fetal surgery , I was ordered to bed rest.  I had moved out of my own house and in with my dad to be closer to the hospital and my doctors ,  which meant no husband or daughter or any sort of responsibility or distraction.  I was able to lay in bed and blog about my weekly doctor visits and anything else that popped into my head.

Since having my Miracle child,  life has been busy to say the least.  And so my blog suffers …   Believe me it isn’t for a lack of things to write about, I just can’t find the time to do it.  And when I do sit down to write, a million other things have happened and I can’t decide which I should share, so as I sit and ponder my eyes roam around the room and I notice things like :

*water rings on my glass table top that need to be cleaned NOW

*Dust on the media table thingy, that I’ll dust while I’m up

*Toys, toys  EVERYWHERE toys ! I’ll just pick them up really quick

And before long, my blog is the last thing on my mind.  It’s a disease, I know … but I can’t help it.  I cannot function when things are unorganized and out of place.   I can’t sleep if there are dishes in the sink , I can’t blog if the house is a mess.