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G is home from his appendectomy hospital stay.  He is awfully sore, tired, and not eating much.....but we can do that here just as well as at the hospital!

Thanks for your prayers!!  I’m so thankful he is home!!

 Now.....if we could just get done with active distraction with Lily.  Her pain is ongoing, hard to manage, and she is not doing nearly as well as a few weeks ago when I posted the picture of her picking her toes.  Poor girl, this is so not a fun Summer.

--Ma

Another Big Announcement

While one child is actively distracting their jaw.....having another in the hospital with an urgent appendectomy is not so fun.  G decided to have a hot appendix, which they removed earlier today, after spending the night in the ER.

 

“DanTonTenSix, Nurse-- It’s an appendix!!”  (for your Madeline fans)

I am so thankful he is okay, so, so thankful that he got through surgery just fine, has already walked around the unit, eaten Burger King fries, you know, the usual post-op fair.  We did have a little reaction to IV morphine.....lots of pretty hives all over, all day.....So, good thing his pain is doing okay, because it is only tylenol for him.  Hope it is generic.

Thanks for your prayers, Friends!!  They sustain us!!!  

God is Good, all of the Time!!!

--Ma

Big Announcement

Jaw distraction stinks.  The End.

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

Can You Believe This???

You know those two girls over there in my right side bar.....the twins peeking over their logo?  I love them.  I am now, officially, DIY dish’s biggest fan ever.  I want to fly out to Utah just to hug them both.  

I WON THEIR GIVE-A-WAY!!!!!  Last month, their sponsor for that particular episode was ProvoCraft. Provo makes fun crafty things like the Cricut cutter and the round knitting frames. Guess what else they make??  Their new product is the Cricut Cake...and Kim and Kris gave one away on their show.  You just had to comment on their blog....and out of 1700+ comments, mine was randomly picked.  Why am I so excited??  Go look at Provo.....way, way cool!!!   Cricut Cake Information

My very food allergic boys have never, never had a store bought, fancy shmancy decorated cake.  Ever.  No decorated cakes, cupcakes, cookies......and while their suffering has been minimal from this small aspect of having life threatening food allergies....it has pained me as their mom that they can’t participate in the festivities like everyone else, when there is a big, decorated cake on the table.  OH, the plans I have now, with this nifty machine!!!!! I went to Michael’s yesterday, dancing around the Cricut Cake display, hoping someone, ANYONE, would ask me why I was so excited, and didn’t just assume I was doing a potty dance.....the fun we will have!!!  

Lastly, if you have ever wanted to quilt.....here is your episode.  Kim and Kris have a very easy quilt pattern that they walk through.   Almost at the very end....you can see when they announce me as the winner.  I was filling out paper work in front of the computer while listening to this, and glanced up to see the winner...not expecting whatsoever it was me.....and when I saw my name, I started screaming.  The boys were so flipped out, thinking something awful had happened, because I couldn’t speak intelligibly for a few seconds. It really doesn’t take much to excite the old girl!! 

Enjoy!!

 

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!!!

A Big Surgery

This past week, my sweet Lily had major surgery.  She had jaw distraction, which is done to lengthen the lower jaw bone.  Then, Lily’s tongue will come out of her airway, and (choir music playing) her trach will come out soon afterwards!!!  No more trachs!! (chant it with me), No more trachs!!!!!  That, my friends, is the goal for this crazy surgery.  Jaw distraction link here--don’t worry, you are already sitting down, right?  So, when your own jaw hits the floor when you see this, the rest of you won’t have far to fall.......oh, get a grip!!!!! It is okay, nothing graphic.....promise.  If my two year old can handle having major hardware screwed into her jaw bone on each side....I bet you can handle seeing what the surgery is all about.....

I will post pictures later in the week, when they take the dressing off around the pin sites, trust me.  She’ll look more presentable.

Can I just praise God for a moment?  All of my prayers were answered for this surgery.  First, she made it through the surgery without giving the anesthesiologist a fit, no stopping breathing, no turning blue.  Making it through surgery--check.

Next, while the pain was intense the first eight hours, and I was nearing a code blue myself, just watching her be in pain.....it did eventually get under control, thanks be to God.
Pain control--check.

Also, no one had any crazy reactions while we ate away from home for more than 36 hours.
No ER visits with epi for non surgery kids--check.

Finally, we traveled safely and all non surgery kids were in good spirits and rallied around their little sister just fine.
Good spirits, safe travel--check.

I felt giddy ( or was that comatose?) as we drove home from the hospital, knowing that all was behind us....and now we just have to contend with the dreaded “turning of the pins”.

Tomorrow, we will return to the clinic and be educated on how to turn Lily’s pins that are implanted into her bone.....and each day, twice a day, for a few weeks, we will turn those babies, and watch before us, Lily get her brand new, bionic jaw.  This is my next prayer request.  From our experience with P, and his jaw distraction, turning those pins are NOT fun.  The doctors all say, “Oh, it really doesn’t hurt, it just scares them more than anything”.  Uh?  Is that what you tell yourself in the mirror, Mr. Doctor, do you practice saying this with a straight face??  Is SNL next for you?

Anyway.....we all know it hurts, right?  SO, please pray my precious girl doesn’t suffer greatly during this crucial part.

When we walked through the halls of the hospital, with Lily in a wagon, people’s eyes would bug out a little.....but you could tell which moms had walked those halls like me...they would smile at me, and say, “Oh, she has beautiful eyes!”  They didn’t flinch.  They smiled at me and my girl.  Thank you, dear Sisters, I needed that, as we all passed several times in the halls of fatigue, pacing with our babies.

AND--thanks to all of YOU for praying, we have been sustained by them.....and I know it is why now, we are saying, “Lily, SLOW DOWN!!  You might break one of your pins if you fall!!!”  Nothing is slowing her down, not even distractors in her jaw!!  Deo Gratias!