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. 

Bears...Boys...& Bikes

Attack of the killer Bear!

 Such a lady with her legs crossed.........NOT!

  These little guys were cracking me (and themselves) up!  They were shooting the blonde guys' older brother.

 Life is just too much fun when you're 4 and a boy.....and have a gun and a buddy!

 Got Em!......Sooo funny:) I thought the little guy on the left was going to fall off the couch laughing:)

 Troy hollered at me to come see what the girls were doing, so I grabbed my camera and ran.  These are taken out the window... They were signing to each other to beat the band......no signs that we recognized......but at least they were trying to communicate!  Wren....(of course).....had rigged up this "gate".  Iley had to go through all kinds of instructions.....that kept changing..... before the gate keeper would open it!  Whew!  I would have taken a detour!  These pictures also show the lovely state of our back patio...........YIKES!  These two can get out more stuff!!!!  I'm wishing I had a lock on the garage and the out building!  After they were done with the gate, they used the hose roller as a gas pump.  Wren would hook the short piece of hose to the trike and then turn the crank.  They had every trike, bike and riding toy all lined up at their pump.

 Then Wren motioned Iley to get on the front of her trike....Iley stood there looking dubiously at her....and decided to brave it.  They rode around like this for awhile............

 Then I'm not sure who decided it was time to switch.  Iley can barely get enough leg power to peddle herself around.....I was surprised that she actually was able to do this:)

 and if you're bored.....you can come over for a swim........it looks like pea soup....or oobleck.....or flubber......take your pick.......a lovely shade of chartruese:)

Friends...Live and stuffed

This little guy is the son of one of Troy's acquaintances from CO.  Him and Iley hit it off all day and played chummily.  He's 3, she's 5.  But in many ways they are much closer in age.  They weren't much difference in size either.  Wren would play with them for a while, then would wander off and do her own thing.....then join in again.  I should have taken more pictures.....but....I was too busy  enjoying a chat with his mother:)   If you are wondering why he's running..........

He was being chased by Annie Oakley and her posse:)

Now I'm not sure who's chasing who....they were just giggling and running.

She looks like she really means business! 

Sunday eve. we went to DQ for Ice Cream.  I'm not sure what Iley was hopping around about, but she actually got both feet off the ground!

Funny thing is.....Isaiah.....the little boy above....carried the little green shovel  Iley has, around all day.  When he left she latched on to it?? Was it because she liked him......or the shovel must be neater than she'd ever realized if he carried it around all day?....who knows.  They told him when they were ready to leave to say bye to his friends.....he says NO....."you don't say bye to friends" :):)  Love it:) 

Ash and Thatch stopped by DQ while we were there.  Check out Iley in the next 3 pictures:)  She's trying to get his attention to tell him something......she finally got through to him what she wanted!

I think he was tired of me taking his picture.....what do you think?

YES!!! That's what I wanted:)

 Monday night August 13th Put it down on record!!!! The girls slept in their own bed for the first time!!!  YaY!!  no more floor beds:)  AND....we get our computer room/den back!  They slept all night without having to "go potty" too!  I'm excited I tell ya!!  When we first got home from China, they slept on the floor on mattress' with us on the couch above them....and they got up at least 2 times  usually 4 or more....to go potty....or just cry out and make sure we were still there. Then we would lay  on the couch till they were asleep...and move to our bed......till they cried....then go lay with them till they went to sleep again.....Then we went on vacation and they slept in their own bed at the hotel with out touching us to go to sleep....then on the floor in our room at the beach house, but we didn't touch them while they were falling asleep.  SOOO when we got home, we put them to bed kissed them, hugged them, said I love you's.....and they went to sleep.....well sort of:)  Wren had a fit the first night...she usually goes right to sleep, but does NOT like changes in routine......and Iley never goes right to sleep.  She lays there and piddles with her bear....sings...signs sign language....dink donks around for about a 1/2 hour every night!  Then finally starts her rocking.  It's the one self soothing behavior she brought with her.  She lays on her back and rocks her self side to side.  Kind of makes me sad when I think about it:(  Poor baby had to put her self to sleep for years.  She almost never cries out in the night.  If I  hear her, It's because she's making little noises as she rocks.

Iley was in Love with this bear of Shermans.  She was dancing with it.......

......sitting on it........

......hugging it.........

......having it hug her..........

She even shared it with her sister when she wandered in from outside.  Wren is almost always outside.....with a rope or a stick......or something else she's not supposed to have....tied to her bike or trike.....or hanging off the handle bars....or just dragging it around.  Iley has been playing outside with her MUCH more lately:):)  For which I'm very grateful:)  They usually play pretty well together when they are outside.  Or maybe I just can't hear them fuss when they're outside??:)

Definitely NOT Goldilocks!....oh and there's only 1 bear.

and here's some close ups for Grandpa.