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1.26.2013

THE REFINING FIRE OF GREIF.

Remember back when I talked about Blogs=Miracles, I talked about one of the mom's I had met named Ashley...she is Johns mom who's situation was JUST like ours.  Because of them, we found out about the Cleveland Clinic (& yes, I *still* to this day KNOW that I was suppose to meet those lady's).  Anyways,  she wrote an article in the Ensign called "The Refining Fire of Grief"...you can read it HERE.  It's a VERY powerful & uplifting article...especially for me, since I have gone through similar situations...grief, pain,  finding healing in grief & spiritual guidance as I came closer to my Heavenly Father.  It was like reading my own story...but sometimes I have a hard time saying it exactly...and I thought it was PERFECT! It's defiantly worth the read :)

1.25.2013

WARNING: TOO MUCH B-6.

Well, nothing ever seems to go "as planned" around here.  Cole's neuro (where we live) suggested we try the high dose of B-6 to help his Keppra rage...and what do you know...it worked!!!  BUT, there is ALWAYS a trade off for this kid.  I gave him his 2nd dose & put him to bed & thought, "he has had A LOT of B-6, I wonder what can happen if you take too much".  So, I googled it (say what you will about googling medical stuff, but google has been my "partner in crime" against "The Beast" aka...seizures.  We've gotten more info from there then most of his drs).  Anyways, I guess if you take too much B-6 it will make your arms & legs go NUMB!  Sure enough, Cole woke up in a blood curdling scream at 12am...he couldn't move his arms or legs...luckily I had JUST read that or I wouldn't have known what was going on.  He was SO freaked out...that it made me freak out, even though I knew that was what happened.  He kept looking at me & crying...like he was trying to tell me something.  I felt horrible that I couldn't make it disappear.  We hung out all night till he fell back asleep, by morning it had gone away.

This poor little guy cant catch a break...his choices are:
 -No Keppra: have seizures
-B-6 for rage: arms & legs go numb
-Take Keppra: have rage
Well, of course we aren't going to give him the B-6 (only small amounts, but it's really not effective for rage if it's a low dose.) 

1.13.2013

COLE'S OBSESSIONS.

I went into Tia Pan 2 separate times. Cole jumps out of his stroller at *THIS* very spot EVERY SINGLE TIME...he dances around the electric plugs and stares at them.  He CAN NOT stop looking at them.  I let him play for 20 min because it makes him happy...then I am dragging him out of the store kicking & screaming!  A month later I decided to test it out again...he still remembers! Weird!!
 I took him into the Disney store because they have VERY red, shinny, sparkly floors...he was in HEAVEN!!!  He stared at them for 30 min
...then we made him leave :(

Shinny Rims!
every time we get out of the car, he does this...

A lady was getting in her car & wondered why Cole was looking at her rims...her rims were VERY Shinny!!! I didn't get a picture of that.
(Mommy's Rims...not so much!)

Cole was CRYING FOREVER the other night...I went in to check on him because he never cries in his crib...he LOVES being in his crib.  I figured out his toy wasn't working...I got it to work for a few minutes & immediately he stopped crying & laid down.  
I think it's dying :-(

 I finally figured out what kind of toys he likes
...CRIB TOYS! 
(only took me 4 years to figure out)
...I searched KSL & found this one used for cheap!!!
That blue dog hanging on the crib is also his FAVE...he sticks his finger in the *tiny* little pocket...so funny!

LOVES his blanket from Aunt Sandy!

He has to snuggle it with both sides of his face.

Dog Food!  We have a LOVE/HATE relationship.  I love that Cole is exploring & found something to play with...

But he likes to throw HANDFULS of food down the vent & ALL over the floor!
It's cute cuz he likes to see & hear them fall.

1.09.2013

CHRISTMAS BREAK.

Well, this was my first Christmas Break home with Cole since being job-less! ...I survived.  I have to say, I am SO VERY VERY thankful that he gets to go to school!  I LOVE this little boy, but having a break and sending him to school is good for him and me...I have a small window that I can get some stuff done.  During the break, the house looked like it blew up!  Normally Cole doesn't touch anything, but lately he's been getting into things & it's been fun to see.  Anything he could get his hands on got thrown across the room or down the stairs.  He's a funny little boy!
Right before Christmas break, Santa visited Cole's class!

...watch out Santa...the "Cole Surprise" is coming!

Goodies.


That cute little boy gave me a black eye :(


I told him Elmo was on TV and he ran over...he knew what I was saying!


Cole was sitting on my lap and I blew on the back of his head (without him seeing me)...then he did it too his hand!  ...I love seeing him learn new things!




Cole got obsessive about sitting on the trash bag.



He became SO obsessive he laid on it for the rest of the night.
Cole's friend, Shad, got him balls! ...he got them out of the bag by his self...something we've been "working on".
He thought it would be fun to throw them down the stairs...
...and dumping ALL of them out! I can't believe how much he LOVED them...thanks Shad!
Santa brought Cole his VERY OWN Trampoline & he LOVES IT!!! ...so does mom & dad.
We are slowly working on putting a "therapy room" together...I'll probably hit up some yard sales this summer :)
Cole made Daddy get in with him...if he didn't he punched his head :(
Watching Dad work on the bathroom...it's coming along...VERY slowly! Although I have an amazing husband who knows how to do this stuff ...I see why people pay professionals to get it done...if we had that kind of money, I think we BOTH would pay just to get it done...were going on 2 months!

1.05.2013

CHRISTMAS CARD 2012.

I went to pick my Christmas Cards up...and look how cute they package them! 




What would I do with out my friends??? ...they are so good to me! One of my friends who is SO talented (Tiffany Bills Designs) took our family photo's & designed our card...they turned out just PERFECT...don't you think! Thanks Tiff.

1.04.2013

RECESS.

Like I said...I don't want to jinx it...but today was Coles first day back to school & they said he did great & was so happy!  I took him home and made him lunch...he didn't have any meltdowns!  ...I'm stocking up on the B-6!!!  His teacher said Coles favorite part of the day is Recess...which I didn't know...we tend to stay away from public places with other kids because he likes to give them "the Cole suprise" (aka: kick, pull hair, scratch, headbutt etc).  ...this is how much he loves recess...Cole was in his hamock (which he loves loves!)...Miss Kim gave him the "5 minute warning" to tell the kids to clean up so they can go out to recess.  She turned her back & Cole was gone!  He hoped out of the hamock walked down the hall, turned down the other hall and was standing at the door to go out to recess (it's pretty far away)...but he knew exactly where he was going! ...that's when she told me she wasn't sure how much he understands, but she thinks he understands more the. What we think he does, he just can't tell us.  He's a little character!

1.02.2013

HAPPY 2013!

Just out of curiosity, has anyone tried the "blogger ap"? I would love to post pics from my phone & so far, the only way that works is through that ap...but it had bad reviews so I just thought I'd see if it's even possible.

Anyways, remember how Cole started having "S's"...we had to up his med again... And you know what happens...he is phycotic!  I feel bad because I can see it in his eyes that it's NOT him. The other day he picked up his "baby Einstein toy" that he normally LOVES...it started playing music & the lights were flashing & his eyes looked like a Crazed Animal with Rabis...I kid you not!  He picked up the toy as fast as he could FLIPPED OUT & threw it across the room a few times...he threw it at the wall & made a loud noise (of course! Cuz that's the law of physics) & it snapped him out of it...and he cried like he was in pain.  This poor little guy can't catch a break...I wish I could see & feel things he does so I can help him.

I ran to the store & picked up a bottle of B-6 vitamins...(which is suppose to help w/keppra rage) we have tried it before, but I went with a different brand & higher dose...100mg (50mg in am & 50 in pm).  It's been a few days since he's been on it & I DON'T want to jinx my self...but I did venture out with him to the store (which most of you know WE never take him out on our own...EVER! ...beacause someone has to cater to his needs or he LOOSES it)...however today, he was such a good boy, he even hoped out of his stroller to dance a bit...but HAD TO HOLD MY HAND. Not because I wanted him to, because he has an interesting anxiety about being in a new place and has  both hasnds clenched around ours or around our leg. If I take a step, he gets nervouse, and shuffles his feet closer to me & squeezes as tight as he can around my leg. I don't really know what it means, it's cute, but I feel bad that he is so scared...BUT glad that he is being brave a getting out of his stroller. Every time I give him the b-6...I LITERALLY PRAY over & over to bless it that it will help with the Keppra side effects & help him to be happy.