Wednesday, June 9, 2010

I Must Make One of These and Lily update

Oh, be still my heart.

That will take you to the sweetest quilts ever, these mini quilts.......I was oohing and ahhing over them like a baby.  Take a look and don’t be surprised if you see a few up on my wall the next time you are here.

Also.......I have mixed news.  Miss Lily is no longer in active distraction phase!  We have stopped turning the pins, and will start counting now our “double the time”, which means if Dr. B. plays by his rules, the distractors will come out the first week of August.  He did leave a little wiggle room with that date, and said it also depends how much new bone growth he can see on the x-ray, and if it is inadequate, he’ll leave the distractors in longer.  I told him Lily’s birthday is later in August and he needs to get them out by then.   Like he listens to me......Actually, I have to say, the last several times we have seen him, he has been very compassionate and listened and took a long time with us to answer our questions.

The mixed part of this that I tell you while I am still jumping up and down in excitement that we are no longer turning pins is......Lily’s jaw is so, so asymmetrical, like crazy asymmetrical.  Everyone has assured us that this is happens, it freaks parents out, (you think???), and somehow, by some kind of magic soft tissue boggie woo shifting after the distractors come out, it pulls mostly back into alignment.  Let’s hope is disconcerting.

Off to work on Lily’s quilt.  She is outside...playing..with Daddy.  Isn’t that good news??  While she had bad moments of pain today, and didn’t sleep the best, I do see an improvement today in pain.  I thank everyone for your diligent prayers!!!!!

Carry on,



  1. We are praying for you. We haven't stopped. I am sorry Lily has been in so much pain. I know that is so hard to see!

    As to the jaw not being quite right... she does look sooo different! It's like a new little face- still sweet, but changed! She looks more like G now! Is the asymmetry something really obvious (if it doesn't change) or something that can be covered by a good hairstyle? I will have everyone praying for this to correct itself.

    Hang in there. And don't you worry, I will ask Jesus to wake up for you. There is no sleeping on boats with many small children aboard- grown men is one thing, but c'mon! Someone needs to be constantly counting heads...

    We gave up all caffeine too. It is rough some days... I know it will be really rough when the baby is born, but it messes with our nerves too much. Like I need help with that.

    Love, B in the middle of somewhere, Texas

  2. Checking in on Lily. So glad to hear there is at least enough pain relief that she's outside playing!! :-) Kathryn from the 4Real group