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5.17.2011

PROGRESS FOR COLE!

 We are weaning Zonegran right now...it's not working.  His absent seizures are out of control...but on a good note, the drop seizures have decreased.  To the GOOD NEWS: Cole has done some pretty AMAZING things...in 1 WEEK!  Everything he has done last week amazed us!  We have been waiting for a VERY long time & it was fun to see them in such a short time.  I took pictures of each one:

Drank out of a different cup then he usually does
(if he feels something different in his mouth then his usual sippy cup, he freaks OUT! This shows us that he can make a connection that he can get a drink from something other then his "cup")

Going down the stairs! -just the last step-
(he had the BIGGEST smile on his face...we cheered for him)

Going up the stairs!
(not all the way...yet.)

 Playing w/water bottles
(he listens to the sound & squishes the plastic)

Playing with toys
(I line his toys up on the table & when he gets up they will ALL be scatted all over the house.  I love it!  I seriously look around at the mess he makes & it makes me SO HAPPY!)

THIS IS THE BIG ONE!!!
(I was SO shocked...i think even his therapist was, when we hid cheerios under bean bags...and...HE FOUND THEM!!!  This shows "object permanence"...he understands that the object is still there, even though he can't see it.)


 -I think he's disappointed nothing is under that one-

 BUT, now he thinks he should eat "little objects"...like pieces of the carpet.

Sit in his chair
(if I tell him to sit as I pat the chair he will "try" to sit in it!)
 Reaching up on the counter
 (I LOVE this!  he reaches up to get his drink...so CUTE!!)

A neighbor had a Toy Story Birthday Party...and had "Bullseye" at the Party...Cole got to ride him.

This little boy of ours AMAZES me!!!  I seriously am SO lucky to have him.  Every thing he does makes us smile.  We watch him run around the house and do the cute corky things he does & it's just so cute!  I love this little guy...good thing cuz I get to keep him FOREVER & EVER!!!

5.03.2011

BLOGS = MIRACLES

When this journey of Cole's started, we quickly became depressed.  I still remember the day our lives changed.  For a week straight, we sat on the couch & cried as Cole would nap for hours and hours a day.  I remember we were on our way home from the hospital after Cole's 1st EEG (at 10 months old).  I had some papers the neurologist sent home with us explaining what kind of seizures he was having. I was bawling as I tried to sound out these words that I've never heard before. I felt alone & scared.  I finally realized that I couldn't just cry forever...I needed to do something.  As I research everything under the sun, trying to find anyone who had the same seizure type as Cole.  I stumbled on  Cristina's blog.  FINALLY!  Someone who knew something...and that someone else exists with the same seizure type!  I contacted her...soon after, Ashley & Nikki found us!  We all became instant friends.  It was finally nice to talk to someone who understood the language and lifestyle that comes with babies & toddlers with epilepsy.  All of them in some way taught me how to be a better advocate for Cole...and I will be forever grateful to them!  If I hadn't found them, I KNOW we wouldn't have found out about the Cleveland Clinic.  I would STILL be sitting here, NOT knowing what was wrong with my sweet baby.  I know that I was guided by the Lord to find these AMAZING mom's.  He knew I would need them for strength, comfort & their knowledge and example.  I love you guys and will FOREVER grateful to you!!!! I am rooting for their kids every step of the way!