Baby steps

It seems that every time I'm writing something, things flip around 180 degrees the other way so that I will look like an idiot.  Oh well, we'll take the risk.  Since my last report on Wednesday, things changed for the better - bit by bit.  Baby steps.  Liam is OOOOWWWWWie a lot less and most of her pain is controlled by Tylenol and sometimes by even simpler means:  turn her over on her side, read her a story, change the CD or the TV channel.  She still sleeps a lot, but this sleep is different, I think.  She's not drugged out this time.  I think she's "burning" them drugs away.  It's not as if she's completely pain free, but it's good to be able to keep the WMD's that we have on hold and use simple Tylenol.


And you have to learn the small signs, but it seems that even the OOOOOWWWWies have a different tone now.  Rather that "it hurts, it hurts, IT HURTS!!!" they mean more "I need to be rolled over" or "I need a different CD" etc.  But from the link I provided in one of the recent posts, it's clear that what we consider a small, almost negligible pain, might broadcast a HUGE PAIN to Liam's brain.

After a rough start to the week, we slept ok the last few nights.  Not straight through the night, but far better than the all-OOOOOWWWWie nights.  Even Frog and Toad got their rest (but The Cat In The Hat may had to fill in for them....all night long, non-stop).


Friday:
After work I went to pick Liam from dialysis.  As I was walking through the Egleston lobby, I passed a small group of young musicians playing for the sick kids - and anybody else who happened to be there.  Two kids joined the band.  One kid was hooked to a breathing machine.  The other had all kind of bags, IV's, hoses - just like Liam.  I'm not sure how well the words they sang synchronized with the music played, but there was no mistake of how they saw it.  The wide smile on their faces said it all. A good start for Friday evening.

In order to transfer Liam from her bed to the wheelchair (and back), one must care for several "devices" and hoses:  her feeding machine (enclosed in a backpack) and a drain-collection back (hooked to her G-tube).  I'm putting one strap of the backpack over my left shoulder; the drain bag I'm stuffing somewhere on Liam herself.  Then I raise the power chair to its max height.  Then, with my mighty height (all 5-6 of it, Kareem laughs), my muscular arms (George Forman squints in envy), and my strong back (total of 6 bulging and/or herniated disks - no joke), I pick Liam up and put her in her chair.  We say goodbye to the dialysis folks and off we go.

At home, Liam is exhausted from the dialysis and falls asleep even before we arrive.  I hold the hand of my good friend Dale and together we walk outside to chat with the neighbors.  Dinner on the porch just  like the good old days.  It's amazing how the simple things in life become so meaningful and important after you were deprived of them for such a long time.

Now it's Saturday.  Yesterday I told Rachel that based on the last 48 hours, tomorrow (today) Liam will open her eyes more and talk.  Sure enough, she did.  She even gave us a few good Liam-smiles.  Every time she does something like that, we're cherishing it as if there's no tomorrow.  Because it's a gift.  We simply accept it and say thank you.

The fine print:
The smart reader already knows what might always happen next, right?  There's no telling, just based on the recent improvement, what would come next.  So I'm not gonna repeats it.  Oops....