I have so many that ask what living with NKH is like....
It is this...
Sunday’s used to be naps and rest... and in some ways it still is... but it also is making sure we get blood so that we can get it to the lab first thing Monday morning in hopes of getting a level on Drake’s glycine later this week.
It is praying, with trembling hands over your 21 month old...praying you can get his blood on the first try so that you don’t have to stick him twice. And thanking God the moment you see flashback... whispering words of praise as you watch the vial fill and for allowing you to be able to carry this burden for your child.
If we don’t have these levels then we can’t adjust his medicines to try to keep his levels in range... levels that if they get slightly off.. just 100 point difference can send him in a spiral of seizures, sometimes one every 15 minutes....for days....
NKH is trying your best to remember every ounce of the now... while trying to stay ahead of tomorrow... because when tomorrow comes, you may wish it was yesterday.
