This seemed like a good idea......till they tried to get out!

Wren fell asleep watching a signing time video Wed. night.

Iley saw me take her picture so immediately went and laid on the chair for hers to be taken.

She was SO NOT sleeping!

We are eating at Wendy's at Hays on the way to KC for Wren's MRI.  They LOVE their Chinese silk dresses!....they do look pretty comfy...like a night gown.

Wren was watching out the window the whole time.  There was a school playground right across the road.  She kept signing "slide" and "swing".  I think she wanted to go over there.

And the goof ball was doing some silly face and acting prissy.  She is a MESS!

Kicked back in the truck watching Tom and Jerry.  Wren is intently watching.....and Iley is picking......till it bled......of course........then we have a small crisis....no band aid.  I'm going to have to learn that band aids go with us everywhere. They are the miracle cure.

This is after 5 hrs. of traveling.....don't you wish these were your dinner companions...........????

We would be glad to loan them out to you......just call......anytime.

 

When we were done, they were full.....and feeling generous.......so they had to scoot their chairs as close as possible and were sharing the last of one of thems' rice.  Then they were so in charity with each other that they linked arms and carried on all the way to the truck.  I SO love watching them when they are like this!  They are just adorable............and not fussing........which makes them so adorable:) or as Iley would say.."yeah, uh huh"  She is talking more and more!  She was headed out the door the other day and turned around to Wren and said " ya comin sister"  MADE ME LAUGH!!!!  I know I say this to both of them...you just don't realize you're saying it till you hear it repeated!  Better watch all my comments.

I wish the background for all these pictures was a little prettier than the dirty truck!

Friday the 24th......6:30am.  Headed to the CMH for Wrens MRI.

Waiting in the waiting room....calmly watching Disney cartoons.....no Idea what's ahead.  She did great!  A children's hospital is the only way to go!!  They numbed her arm first, then put her IV in....hitting the vein the first try......she never even flinched.  Then she cheerfully went off with the nurse.  I told her "mama wait here, you go with nurse"  She nodded and off she went.....how much of that she understood???  I don't know.  How much of it was just that she likes everyone, and would probably go off with a total stranger......I don't know.  Makes me worry some what about her bondedness:(  Or is this a deaf child trait?

This is Iley in the waiting room....she was all chummy with this little dumpling:)  They were so cute looking at their books together.

Wren wasn't allowed to have any food or drink after 5:00am. so none of us had breakfast, and we removed all cups, water bottles, toothbrushes etc. from view.  We took them to the bathroom when they were barely awake so they wouldn't see the sink and think of a drink!  Wren is BIG about wanting a drink!  and NOT patient or nice if she's told no.  All that to say...we headed to the cafeteria as soon as she was wheeled in to her MRI.  It took about an hour so we had plenty of time.  When I came out to the waiting room, and we got up to leave with out Wren, Iley starting fussing and signing Wren with a VERY worried look!  I love that she was worried we were leaving her:)  I did wonder what was going through her mind.....in her experience, kids disappear.  people come and go in your life.  We assured her that we were going to go get something to eat and come back and get Wren.  She calmed down but was still worried for a while.

When we asked her if she wanted cereal, or eggs and bacon...she signed cereal.  We asked several times, and even showed her the options.  No. she wanted cereal...........she ate at least two bites......

.........then proceeded to eat my ENTIRE plate of food!!

NOT a bit remorseful either!

This is Wren after the MRI coming out of the sedatives.  She was so floppy, and would drift off to sleep without warning.  She thought she could walk..her mind said she could......but her body just didn't cooperate!  She wobbled around like a drunk.  We had to keep a hand on her constantly or she would charge off and crash.  She got this hideous lovely barbie with pink hair AND pink legs..with butterfly wings that we lost before leaving the hospital......for being so brave.

It was MUCH coveted by lil sis.  When I asked her if she wanted to go get a shot so she could get one too...she was quite willing.

When we said no........oh it was sad:)  These people just don't understand that we do everything X's 2.  If you don't have 2.....then we don't want any thank you.

Iley playing in the Audiologists office while we talked to the surgeon, and Wren did some testing.....well they tried to do some testing....she was just too La La La.

Home again!  Ash was here and they were O so happy to see their jungle gym  brother.  This was just the activity we needed at 10:00pm. to get them ready for bed.........NOT!!

1....2.......3........JUMP!

.....some launch carefully..........

.......others with wild abandon.........

Oh...you're looking at me......I'll put on a show:)

MRI Findings

 

The MRI yesterday was GOOD.....and frustrating!  She has everything she needs and is a perfect candidate for an implant...BUT....the MRI showed some Myelin deterioration on some of her nerves.  They want us to see a neurologist to be sure it's not an active deterioration.  Nothing in the dye lit up as it normally would when something is active, but they are recommending that we wait 2-6 months to implant so we can do another MRI and see if it's changing:( I want whats best for her, but my gut feeling is that it was caused from an OLD illness, and is probably what caused her deafness in the first place.  In my researching she has none of the symptoms of this ongoing disease.  The doctor said we could implant anyway, but for the follow up MRI, we may have to surgically remove the magnet.  You CAN do MRI's with special protective measures, but he said it sort of distorts the image because of the magnetic pull of the magnet??  If she needed several MRI's removing the magnet each time would be a LOT to put her through. I just want to SCREAM!!!!  Her language window is closing:( 

The myelin sheath is a fatty layer that protects nerve cells, extending to cover the nerve throughout its length, except in small, unmyelinated gaps known as the nodes of Ranvier. Myelin aids in accelerating the speed at which an impulse travels along a nerve by causing the impulse to jump from one node of Ranvier to the next. Damage to the myelin sheath, called demyelination, compromises the nerve's ability to conduct impulses

Read more: http://www.livestrong.com/article/148679-what-are-the-causes-of-myelin-nerve-damage/#ixzz24ZI6GYxT

Summers End...

I think they're rushing things a little....they haven't even attended their 1st day of school yet.  Monday will be their first day of school:)  My first day too in quite a while... as I will go with them at least the first day or so until they are comfortable and feel safe....how long  has it been since I rode the School Bus.LOL  Well....other than field trips with the boys.

 They will be awfully cute little graduates:)

 Hopefully they will have graduated from sippy cups by then??

 This group of kids came swimming on Monday.  Poor things, they ended up here as a last resort...and trust me...it aint no resort......they tried the town pool...closed......they tried the neighboring town 25 miles away...the answering machine SAID their pool was open....but it was closed...so with  a car load of GRUMPY kids they called in desperation......you would HAVE to be desperate...... to want to swim in our oobleck!  Well desperate or under the age of 12:)

 Investigating a bug.  Wrens right up there in the middle.

 I'll look from back here thanks.

 The swim party was supposed to be for Evies birthday...sorry Evie, that the pool wasn't a little nicer:(

 Warming up.....it wasn't the warmest day of the summer.

Grace was Cold!

 Taking a break from swimming for a snack and drink.

And...of course the boys always have to make things a little more interesting....Wren watched them...and of course had to try the same thing......small problem.....when she stacked them all on, they came to her armpits and she couldn't move her feet!LOL  I didn't get a picture cause I was too worried she was going to faceplant on the concrete before I got them off.

Here's a view of the green water......I haven't heard that it cause ill effects on any one....but ugh!

 We have to HIDE our phones from this pair of racoon fingers!

 I wonder how many times a day I ask Iley what are you chewing on...and say spit it out.  This time....it was bandaid wrappers!  Last time it was a squinky, or a polly pocket peice of clothing.....at least those are chewy...but bandaid wrappers???

Some New "Firsts"

We have had several "firsts"  this week.  We go along feeling frustrated, and like we are not getting anywhere with Wren's signing, and Iley's English, and then we have some break throughs.  It's so exciting when it DOES happen.  When we really stop and think about where we started, and where we are now...there is progress every day.  Sometimes it's just hard to see past the tantrums and whining, to the good stuff.

1. Iley started saying "potty mama" instead of just doing the potty sign.
2. Iley started saying "done mama" instead of just hollering or fussing! YAY!
3. Wren was running and in midstride jumped over the railroad tie in her path!!!  This is HUGE!  She could barely walk across the uneven yard when she first got home.  Before she would have stopped and probably reached for our hand just to step over it:):)  So we are excited. Coordination is improving!
4. Iley is learning most of her basic colors.
5. Both girls did REALLY well in church this Sunday!!!  I actually heard most of the sermon.
6. We left the girls for the first time while Troy and I ran to Hays to get a few needed things.  Kyndahl bless her heart, agreed to stay with them.  We were a little nervous about how they would react when we left!  And "how" to explain what was going on to Wren.  WHEN she looks at me long enough to "listen"  she really is amazing at understanding.....and like I've said before.....you don't want to challenge us to a game of charades!  Kyndahl got them all settled cozily in our bed in their jammies...her in the middle...and got a movie going.  When we came in we just told them that mama and babba were going to town/bye bye for a little bit and we would be right back.  Then I pointed to both of them and said you stay here with Kyndahl, Harrison, and Sherman. Mama and Babba come back soon.  Iley started crying...a little...but Wren just waved bye and went back to watching her movie:)  Kyn said we had barely made it out the door before Iley stopped.  They got along great, no melt downs or tears!  YAY!  They aren't clingy, and at the wedding we went to yesterday, they went off happily with the cousins and weren't worried we'd leave them.  I am new at this bonding business, but this seems good to me:)

 Eating a "healthy" Rice Krispie Treat snack:)

 A little sisterly elbowing.....??

 This is how they like to watch signing time videos!  Up close and personal!  It's not like the screen is tiny and they can't see it??? 

I could also compare the AWFUL AWFUL bus trips we took in China.......to the 5 HOUR car trip we just made to Eastern Kansas.......and will make again on Thursday.......  In China we tried to buckle them in the seat and they went BALLISTIC!  Now they buckle in with no problem, and sit and watch the Ipad or play with their toys and books......AMAZING!  The people in our travel group with us in China, would not even recognize these two now.  Especially Iley!  She was NEVER still for ONE minute in China  now she will sit and play quietly, and focus on something for long periods of time. 

They are so funny to watch!  They play and play and never make a sound.  They sign to each other and ask questions by motioning and raising their eyebrows in question......they will shake their head no, or nod yes, or shrug that they don't know what the other one wants.  Sometimes they just look at each other and wave their hands around and look like they are talking with no sound coming out.  But they are close enough in age and interests to somehow sort of "get" what the other one is talking about.

In the tub this morning I gave them each a squirt of body soap, and they always start by rubbing it on their stomachs, then their bottoms, then Wren looks at Iley and points to Iley's back and makes rubbing motions with her eyebrows raised in question....asking her...you want me to soap your back?  Iley shakes her head NO.  So Wren shrugs and points to her own back, and Iley nods and starts soaping her back.  When she's done, then Iley points to her back and lets Wren soap hers.  All this without a sound.

I was watching them out the window as they were headed to the swings.  When they got there Wren hops up on a swing, but Iley is too short to get on so she stands there motioning for me to come out.  I opened the window and told her to pull the little trampoline over and stand on it....to which she looks at me blankly....but I had no sooner got the words out, than Wren is doing exactly what I just said!  She didn't hear a word from me, or even realize i just said something, but her mind was problem solving exactly the same way!  Iley still couldn't manage it with the wobbly surface of the mini tramp, so Wren held the swing down and Iley worked her way on.  It was SO cute to watch them working together !!!!!  I LOVE it when they get along like this:):)  Wren makes me nearly insane on an hourly basis with her stubbornness, but she is SO smart, and I KNOW that when she finally figures out how to communicate she is going to do amazing things.