A Flickering Shadow

 This one won't be a terribly long update and it will certainly be a jumbled mess of how Ash is doing and some of my random thoughts interjected.  Just wanted to provide some insight as to where we're at.

Over the course of the past 12 days, Ash has continued on her steady decline.  We started tapering off some of her medications that were essentially supplemental and not vital to continued operations.  We changed the mode by which some of those medications were taken (i.e. crushed, mixed, etc.).  This worked well for a few days.  In fact, everything we've adjusted over the past two weeks has worked well for a day or two before we had to continue making adjustments.

The most significant (until tonight; more on that in a minute) decline has come in the form of decreased water intake.  She takes in 2-3 ounces of water a day.  This has been the case for the past 5-6 days.  We know that's not sustainable, and will likely be one of the key culprits in what's to come.

She had a pretty gnarly cough for a bit, but it resolved and her breathing is much easier now.

On to tonight (read as: the motivation to write an update tonight)... today (also in the past few days) Ash has slept 22-23 hours a day.  With the remaining awake time is sporadic and comes in spurts of 10-15 minute chunks peppered throughout the day.  We've noticed the trend of her being able to more readily sleep through her nurse visits (and bath/linen change out time).  Tonight, however, she was awake as the girls were going to bed but was not really coherent.  We tried to give her some water and she really struggled to take it.  This led me to a decision point where I've had suspended her regular medications.  If she's not able to safely swallow any more, we've hit one of the final milestones on this walk.  

(Side note, and I think this goes without saying, but I'm saying it anyway: I do not like any of this.  Having to make these decisions.  Watching her fade.  Navigating all of this with the girls.  It's heavy, I can't sleep, I'm agitated. ...and yet, I keep coming back to an adage my dad used to tell me, "[this may not be easy and likely not fun, but...] the only way out is through.")

With the suspension of her regular meds, it's a near certainty that we'll see an increase in seizure activity.  We've already started to see an uptick in recent days.  Tonight we even witnessed some activity in her mouth/jaw/tongue.  Though we've stopped her regular meds, we are still giving her some Ativan and will likely increase it's frequency in the coming days.

With that being said, tonight, though she was awake for a short period... it is likely that the coming days will be filled with sleep.  As such, once the decision was made to hold on her regular meds, I went and got the girls out of bed to let them come up here to see and talk to their mom awake (for what could be the last time).  I'm not trying to over dramatize the moments, but everything is starting to blur together and I'm documenting for future recollection. After a few minutes of letting them lay in the bed with her and tell her that they love her, I went and put them back to bed. (I've run a risk here; I may have created an opportunity for them to be more sad in the near term; but I've also, hopefully, given them an opportunity that will be remembered in the future as a sweet moment with their mom... feels a bit like shooting from the hip, but I feel like I'll regret this choice the least compared to the alternative of not providing them an opportunity... ugh, I digress) My oldest certainly had some questions and I've found that neither she nor I can actually say out loud what is about to happen.  We talked about giving mom some meds that will help her relax and will likely make her really sleepy and that she may not be awake anymore... until it happens.

Anyways, all of this summarized, would basically tell you that we are absolutely in the final days.  Extremely poor water intake, meds being curtailed, coherence and interactions have all but ceased... the air is thickening and gravity is growing.  I know the days to come will be a whirlwind, but I will do my best to keep everyone informed.  

Thank you so much for encouraging our family through prayer.  Thank you for the meals and messages.  Thank you for those who are investing richly into our daughters.  Certainly going to be a rough ride, but even through all of this, God is providing.  Even when my eyes can't see what He's doing, I trust it will always be for His Glory and for my good.