Praising God from the Rooftops!!

Lily is doing so much better!!! No pain meds for nearly 10 hours!!  I bet she is wiped out tomorrow, but for today, we are so excited to see her playing, swinging on her new swing, drawing in the playhouse, going on errands.....she has been very busy!

Thanks, Friends, for your prayers.....had to share with you the fruit of your faithfulness.  I am guessing we will continue to have up and down kind of days, but I think overall, Lily is on the upswing.

God Bless you all!

--Ma

The Last Few Weeks

So, a lot has gone on the last few weeks.  Just one of those things would have been busy enough, but we have compound interest in chaos.  G. is doing great after his appendectomy, which is a blessing, because Lily has had a very rough few weeks.

Here are a some peeks into our days:

Oxycodone staggered with tylenol.....heavy duty for a 24 pound two year old, and it is barely cutting it. If you look very closely, you’ll see the black plunger to a syringe stuck inside the oxycodone bottle.  I dropped it in there at some point. and can not get it out!!  So, because I am completely sleep deprived, I actually had a conversation in my head with myself that went like this--
“Oh my gosh, do you think the plastic from the syringe might leach into the medicine and contaminate Lily with some kind of BPH something or another?”
“Geez, maybe you should get more sleep”
“No, really......I must get that out, it might change something in the medicine if it stays in there, where are those tweezers?? Preferably the ones not used to dig glass out of people’s feet!!”

Yeah.

So, anyway, that brings us to this:

I had another discussion in my head this morning.  I contemplated going back to real, fully leaded caffeinated coffee, given I have had very little sleep lately due to Lily’s pain issues.  I said to my self.....again....”You know, maybe I should fix some coffee with insurance in it”.   INSURANCE.....that is what my tired brain said to myself.....I said insurance instead of caffeine. I am thinking in a weird kind of way, maybe caffeine IS insurance......

Next...

Speaking of insurance, this is sanity insurance for mama. I started another quilt, specifically for Lily.  I cut it all out on Memorial Day when I had lots of help around, and have sewn on it early mornings as Lily watches PBS.  I discovered that I can do a large majority of “quilting” in the embroidery hoop, how cool is that??  I can’t wait to show ya’ all.  Happy colors rule here.  The best part is, it all came from my fabric stash.  I didn’t buy anything for it!!  T, you might recognize some colors from your own lovely quilt....that is nice in a sister quilt power kind of way, don’t you think?  

  

I have become uncomfortably familiar with St. Therese of Lisieux’s phrase, “Jesus must be asleep in my boat, and I will just let Him rest”.  In my many, many prayers for my girl the last few weeks, I didn’t say it so sweetly as Therese did.....I yelled, I cried, I pleaded.....and yet He still is asleep, asking me to have Faith, and then some more Faith.....and more still....stretching me into who I am suppose to be.....surrendering our children at the Foot of the Cross is painful, bittersweet, and painful, and oh.so.hard!!!!!!  In the end, He wins, and in this life of special needs children, I hold on to that with all I have.

And finally, my girl....hamming it up.....sporting her new and improved jaw.

What a brave little girl.  Pray for her, pray for pain relief and a return to sleeping without crying out in pain, and for people not to stare too much when she is out.....she wants nothing more than to play and visit with people, such a social little thing.  Her pain should start to subside pretty soon here, we are only turning one pin now, twice a day, instead of all four, probably for a few more days.  I know as we return out into the world in the weeks to come,  going places other than church and the doctor, strange looks and stand offish behavior from others in public would probably break her heart.  So you better be nice to her.....you’ll have four big brothers and a Papa Bear daddy to answer to!!!!

Thanks, Friends, for you prayers.   

She insisted on getting a shot of her foot.  Probably doesn’t hurt like everything else!!

Oh Good Grief!!!!  When will he say my jaw is big enough????

Request

Can anyone email me some chocolate?  While you are at it, send me a tall soy decaf latte, okay?

Lips...we are focused on lips, Lily’s lips.  Her bottom lip is apparently numb, from the surgery, and now she is biting her lip.....a lot....like, if my lip looked like that, I would need serious pain meds.  I am so sad for my girl, she is going through so much.  I am thankful Lily is so young, and hopefully will not remember this.  I was assured by the nurse that this is usually temporary, and she hasn’t seen anyone where it is permanent.

God’s grace is sufficient, and I do think He uses chocolate as one of His tools, sometimes....

--Ma

A Little Math

So, after last post, you might have whipped out your scrap piece of paper and white crayon and tried to figure out how we went from “6-9 weeks” and after the doctor mentioned “a few more weeks of distracting”-- how in the world that got up to 13 weeks.....sorry.  I had a bunch of people swarming me like monkeys in the forests while I was trying to compose that last post.

Here  is how it works.  For every week of active distracting, (turning her pins to lengthen her jaw), we keep the distractors in, double the active distracting time, locked into place, for “consolidation phase”.  Consolidation is the process of the bone filling in where we made a gap in it with the distractors.

Story problem.....real life.....Lily’s distractors are turned every day for 28 days.  How long will her distractors stay on past those 28 days??  How long, total, will Lily have distractors on each side of her face?

Okay, turn upside down, I have the answer written upside down  at the bottom of the page.

Never mind, that was too hard.  Eight more weeks after four weeks of distraction, for 12 weeks total, although Dr. B. psyched us out yet again, and didn’t tell us there would be a week lag time between surgery and starting distraction, so tack on another week....13 weeks total.....Look!! That matches the number up there in the first paragraph.  Oh.....and actually, it could be even LONGER.  Dr. B said today as well.....”Double distraction time is the least I would leave the appliance in, so it could be longer than that.”  Funny I never heard least in our previous conversations.

If you saw a lady walking through the garage at the hospital today, with the little girl below, and the lady was crying.....that was me.....it all can be a bit overwhelming.  I am so thankful Lily is doing great, she really is an amazing girl.  I just didn’t feel equally amazing today.  Lily, stay amazing.  Mama will continue to take lessons.

Over and out,
--Ma

Lily Update

So, it has been a few weeks since surgery, and this is how she is doing....

Pretty amazing, eh?  Lily still has moments, but for the most part, is doing really well.  I am not sure, with six inches of metal sticking out of my head on both sides, that I would have any smiles.....whatsoever...ever.

We saw Dr. B. today, my favorite plastic surgeon.  Ahhh, Dr. B.....I want to like this guy, and sometimes I really do.....but I was not happy today when he said we would be distracting another few weeks......said, like, “Yep, she has a ways to go yet, we’ll see in a few weeks.”  Yep, just stuck a dagger in your heart, now like it.  Yep, no park and play equipment for you this Summer, now get over it.  Yep, she could get an infection in her bone, so keep that really clean, go forth and deal with it!!” as he smiles. I swear they practice this.  Keep smiling, keep talking louder and faster when the mom’s face drops and tears start to splash around in her eyes.....All I could think was, “Sheesh, I thought he said 6-9 weeks of this....not 13.”  I know, five more weeks than what we were prepared for sounds like a drop in the bucket.  The problem is,  you can’t let her out of your sight.  Lily is dangerously fearless.....and when the surgeon says not to let her fall, because those pins are stuck into a very small piece of her jaw, and could snap and break easily, each fall is a heart stopper.

So, I need to adopt her attitude.

Just keep focused on the little details, like toe nails.....and we’ll all be okay.

Shout out to Marilyn....thanks for the outfit, isn’t it cute???  One big positive today:  Lily discovered twirly skirts.  Oh....that is so, so cute, seeing her swirl around, watching her reflection in the stove, as she swirled and twirled...and I silently said prayers that she wouldn’t fall, and rejoiced out loud how awesome that skirts twirl.

Life goes on.

Love to all,
--Ma

Turn Pins No Pain

Lily’s pin turning went great!!  Well.....other than the fact the nurse was a tad confused and turned some of them.....the WRONG way.  I’ll save that story for another time, and then immediately go to Confession.  Anyway, Lily was a trooper as we messed with her pin sites, cleaning her up a bit, and as the nurse tried to figure out which way the pins turned.  Here is a hint.....lefty loosey, righty tighty.  It is true, not an old wives tale!!!!  It even holds true for jaw distraction pins.  The doc on call ( our surgeon was out of town), even repeated the lefty loosey, righty tighty mantra, maybe we’ll switch to him, he was a lot more personable.

Thanks for your prayers!!!