Milestones

Ok - this is fast becoming one of the worst maintained blogspots in history.  I sense a New Year's resolution coming on.
Christmas is fast approaching when all I want is for time to just slow down.  What is usually seen as something to look forward to now signifies another milestone that is bittersweet.  I really don't feel like celebrating but there is almost a sense of having to make the most of this year as Amber starts to decline.  Two days after Christmas, Amber will be 18 months old.

Amber's first photo with Santa

We had a very rough time last week as Amber caught some kind of virus & stopped eating & drinking.  I have never seen her look so weak & frail.  There is now talk of inserting a nasal gastric tube to supplement her feeding as it is such an effort for her to put on weight in the first place that she simply doesn't have the reserves to fall back on when she gets sick.  I just want a "tube-free" Christmas.  It is a massive psychological hurdle to accept a tube taped to my baby's face as the moment she gets this there is no avoiding her regression.  All our photos from this point will be of a sick-looking baby & these are not memories I want.
However it would seem my girl is a fighter (I can't imagine where she gets her stubbornness from!) - we narrowly avoided admission to hospital for rehydration as she started feeding again - small but frequent amounts & the vomiting eased.
With her episodes of whimpering & unsettledness persisting we ended up giving her a very low dose of morphine - another first that caught us off guard.
But the "first" that I was really dreading came on Friday - I could no longer get her to sit up independently.  It was a day that I knew was coming but a day that I would never be ready for.  For some reason the loss of this particular skill hit me hard.
As the days have passed I have persisted with feeding her as frequently as possible - day & night.  Having some fruit puree at 3am is not that unusual around here.  She is gaining back some strength & while her head control is very obviously weak she was able to sit up again today!  She has declined to the point where she relies on her hands on her legs to prop herself up but today she even lifted one hand to reach for her dummy (pacifier) & attempted to put it in her mouth.  I couldn't believe it.  I cling to every little thing she does that shows she is resisting this awful disease.  I keep telling myself - "just one more day".  I cannot fathom where we will be a month from now so I simply don't allow myself to think of it.  We exist for now & sometimes tomorrow but no further ahead than that.