Lump in my throat

It's a lump in my throat kind of morning.  Dave and I are both feeling more sad today - as reality sets in. Thank-you for your prayers.  God is good to us.  We are surrounded by such wonderful people here and we sense your prayers and support.  Some of the staff have mentioned that perhaps we were given a 'trial run' for what is to come.  And there are some benefits in that.  It does help prepare us in some sense - it gives us an opportunity to plan how we want to respond the next time, what to do for Rachel, our other two kids etc...It also causes us to deeply treasure our time with her.  We are soaking her in, the warm weight of her in our arms, her toothless grins...! 

Rachel is doing really well.  She is sleeping and eating and smiling.  She is so strong!

The MRI is not happening today though. That was disappointing for us. It has been booked for the 27th now.  I may have misunderstood the date? And the MRI is booked solid until then. We are going to try another echo today, this afternoon.  I'll post again later.

(later) The echo went well. Dr. Fruitman was able to see more this time than before.  But basically there are no changes that indicate any reason for her 'episode'. What we do know is that Rachel is more fragile - she has less reserves available, which means we still have to be prepared for this to happen again, at any time.  She has not had a BM since Sunday (this is what set everything off).  We are nervously waiting for her next one.  I find my heart lurching with small changes I see in her, more blueness, congested sounds, the way her eyes look. (She is really doing so well so I may be a bit hypersensitive.)  I still don't think I can write about Sunday night.  There is nothing easy about this. I am asking God, that when the time comes, he will take Rachel home in her sleep.  We are trusting Him, whatever comes but that is our wish. Please please pray for us that we will have courage and strength in these hours/days.

Despite the sadness in our hearts, there have been some beautiful moments today.  We made srcrapbook sheets with our handprints and the kids footprints. (embossed)  We even got Rachel's open hand on one paper.  All our kids really enjoyed doing that - Rachel loved the feel of the stamp pad on her feet.  Then we joined the house in listening/dancing to some great fiddle & guitar music.  Both men are chaplains as well.  That really was a bright spot in our day,  Thank-you!!!

I want to share a link. It's the video about the Flames House, that we watched at Thanksgiving.  A staff here passed it on.  Thx Jason!  http://www.youtube.com/watch?v=ZclOqWMtt84&feature=email