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If you would like to contact me, leave a comment at the bottom of the last post. I moderate all comments before they are posted, so if it has your email I won't publish it.
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7.25.2011

UPPING THE MEDS.

I talked to the Neurologist today...we will up Vigabatrin by 250mg and will follow up with them this Friday.  If Cole's seizures increase, they will start weaning the Vigabatrin (takes about 2 weeks).  If they decrease or see no change in seizures, then they will up it by another 250mg.   I let the dr know he has about 100-150 seizures a day now (more then before the meds), he falls backward while having a seizure but the absent seizures have decreased and his cognitive has been amazing!!!   The month of July he has learned to:
-STAND UP WITH OUT HANDS
-CLAPPING MORE
-GOING UP THE STAIRS (NO HANDS OR HOLDS ONTO THE WALL)
-PLAYING/AWARE OF THE T.V.
-PULLING STUFF OUT OF THE SHELFS
-BENDING DOWN TO GET THINGS FROM DIFFERENT PLACES
-LAYING DOWN ON THE GROUND GRACEFULLY
-CHASING & TRYING TO KICK THE DOG
-MOVING HIS HAND IN A "HI" MOTION
-SWINGING THE DOOR OPEN TO THE STAIRS
-CLIMBING ON EVERYTHING!!!
It has been AMAZING watching him learn new things!!!  I can't even tell you the relief and happiness that we find in watching Cole learn new things.  He is an amazing little boy with such an innocence about him, I can see it in his face and the way he looks at us.  He is so trusting and we love him so much!  On the "not" so good note,  he's been waking up at night and screaming for an hour.  He seems to go through long periods of waking every few months.  We are pretty sure the seizures are waking him.

7.20.2011

WHAT DOES A DROP SEIZURE LOOK LIKE?

I decided to post a video of Cole having a cluster of "Drop Seizures" & "Absent Seizures" (at the end of this post) because the day Cole started having them, I knew NOTHING about seizures. I thought a seizure was a grand-mal (where their whole body shakes), but there are actually 40+ different types of seizures. I searched high and low on the internet for a video of seizures to figure out what was wrong with my little boy. I didn't want to believe it & to be honest, I thought if we got to the hospital & he was having them, they would figure out what he needed and "fix" the problem, little did I know what our little boy was in for & how our lives would change. In this video the "Drop Seizure" is obviously when his head drops forward and he falls to the ground. The "Absent Seizure" is very easy to miss & a lot of people don't even know they are having them, in the video, you will see Cole look up at the ceiling move his eyes slightly back and forth or his eyes will be fixed on something. Some people think because these seizures don't "look" as bad as grand-mals that it is better on the person, but a seizure is a seizure and is just as damaging to the brain, especially the "Infantile Spasms" which Cole has as well (he has them the same time as his drop seizures"). However "Infantile Spasms" take a HUGE hit on a child's development and can mentally handicap a child.
(you can pause the music at the VERY bottom of my blog. to see the video better click the you tube writing in the bottom right corner to watch in you tube).

7.17.2011

FAMILY & FRIENDS.

Sorry it's been so long since I've posted something!  We have been super busy...both of us working, painting our bedroom to brighten up our lives (which means every other room is in chaos), doctors apts and going to the pool with friends & family on my day off!  I love it when my friends or family plan things because it helps me look forward to something.  I love being with them...even if it's just to "hang out".  I am trying to get better at getting out of the house more.  Since Cole started having seizures and also starting the ketogenic diet in 2010...we never left the house very much.  So, I decided since he wasn't on the diet anymore...I would try to get him out of the house more.  It's been better since he only takes one nap now...well, he still takes 2 some days, depending on his meds and seizures.  Anyways, I was thinking of how much I love my family and friends...and today's lesson at church today was just that! (which it was an amazing lesson and I really enjoyed it!).  Thank you to everyone who has "gotten me out of the house" on my days off!  I love you guys.  And thank you to the sweet people who let us know how much you love Cole, it makes us SO HAPPY :)
On July 22, I will be calling Cole's neurologist...he will let us know what the next step is with his medication....if he wants to do an increase or start weaning.  I have the hardest time playing the "waiting game" as it always seems to creep into our lives...I guess that is a sign we need to learn patience.   But guess what, Cole climbed all the way up the stairs by his self...it was his idea!  Now we need to work on going down the stairs before he sneaks up there and falls!  I love that little boy.

7.06.2011

BENEFIT CONCERT FOR COLE.

Oh my goodness, it has been a LONG week!  I thought both of us were going to loose it.  Cole's new medication has made him EXTREMELY angry.  I thought he had "keppra rage" but WOW!  He is finally leveling out from the medication...however, tomorrow we are upping the Vigabatrin by 500mg (which will be the "therapeutic"  & maximum dose for Cole).  So, I think the rage will be back...the word "rage" doesn't even describe it...wish us luck, because our patience was hanging by a thread and now we have to double the meds! 

Anyways, on to the Concert for Cole!  Cole's babysitters are putting a Benefit Concert on for him (THIS IS A *FAMILY* FRIENDLY CONCERT, so bring your kids, parents, grandparents etc):
Here's the line-up: 
5:00 - Crossing Magnum  
5:45 - Bree Partridge        
6:05 - Dustin Christensen  
6:50 - Maddie Penrose     
7:10 - The Parkers            
7:55 - They Shall Be Lions
8:40 - Maddie Penrose     
9:25 - Devin Knight          
Keep in mind that times may vary. The event will most likely run longer than this, and bands won't be starting at the exact times, it's more just to give you and idea of when to be there if there's a specific band you're coming to see.
 Also, Winder Farms is going to be there giving out yummy drinks. They were nice enough to want to sponser Cole! They'll be sharing information about their "Friends of the Farm" program, and for every person that signs up with them, they will give $45.00 to Cole.

We are SO lucky to have Morgan & Ashley in our lives. Thank You SO much for ALL of your hard work!  We love you guys :) 
This is the blog they made for Cole: Fundraising For Cole