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4.25.2010

COMING TO TERMS...

It's been a bit of a hard week this past week. I knew Cole's evaluation for his developement (through the Early Intervention Program) was coming up. Looking back 8 months ago (when his seizures started) I knew he hadn't made a TON of progress as far as his "developement"...except for walking (which we are still super proud of him for!!) Things that Cole has learned have come & gone (ie. signlanguage, pointing, waving, saying "mama" or "dada", picking up food etc.) It's hard looking back & watching videos of him at 7 Months Old waving to me or babaling "mama" and I so BADLY want to know that little guy again. Yes, he is still the same SWEET, LOVING, HAPPY baby...but in ALL REALITY he's VERY different. That 7 Month Old Baby is just a memory to me that I will keep close FOREVER...

I am having a HARD TIME (though I keep a good "frount" on & I look like I've got it together at work, church, etc.) coming to terms that he may never "catch up" & he may always "struggle". But, miracles do happen. They happen all the time. (Don't get me wrong...I LOVE this little boy more then I could ever imagine or express either way & I think that's why this is so hard for me to deal with) I've gone through ALL the stages of HOW COULD THIS HAPPEN!!! TO WHY IS THIS HAPPENING??? TO I JUST DON'T UNDERSTAND!?!...ECT...ECT. I've accepted the seizures (though it still seems like a foggy dream that I am in & I am lucky I know what day it is).

Now, I need to accept the fact that he is VERY behind in his developement & he may not be able to ever do things other kids will/can do. I talked to his Physical Thereapist...He dosn't have Autisim...but, he DOES have AUTISTIC characteristics & SEIZURES. Obiously we don't know if he will ever come out of either of them...but, we can HOPE & PRAY. I know Cole's "miracle" will happen...I just need to remember that it may not come in this life. I KNOW with out a doubt that HE WILL be made Perfect.

So, with that said...I would love to hear from ANYONE & EVERYONE...how to cope...either an experience you have had, someone you know has had or just advice.

HERE ARE THE RESULTS ON HIS DEVELOPEMENT:
(HE IS CURRENTLY 18 MONTHS OLD)

-SENSORY ORGANIZATION: NO CONCERNS
-THINKING & LEARNING/COGNITIVE: SEVERE (8-10 MONTH RANGE)
-RECEPTIVE LANGUAGE/COMMUNICATION: SEVERE (8-10 MONTH RANGE)
-EXPRESSIVE LANUAGE/COMMUNICATION: SEVERE (9-11 MONTH RANGE)
-GROSS MOTOR: MODERATE (12-14 MONTH RANGE)
-FINE MOTOR: MODERATE (12-14 MONTH RANGE) *has regressed since eval & is severe
-SOCIAL/EMOTIONAL: SEVERE (11-13 MONTH RANGE)
-SELF HELP: MODERATE (12-14 MONTH RANGE) *has regressed since eval & is severe

*ALL AREA'S ARE NOW SEVERE EXCEPT GROSS MOTOR*

4.19.2010

FORCE FEEDING???

Oh, how I love the days when I have to FORCE FEED Cole. The "culprit" is usually the cream...a.k.a. Most Important Part of the diet. He does pretty good eating all of his food- I mean there's not a whole lot of it...1 oz of cream, a DAB of applesauce, a slice of butter, & bits of cheese (yes, that is all he gets). He usually goes in spurts of eating REALLY well & the next day...we literally have to pin him down to get the cream in. Nope, not something we "want" to do...but, it happends!


This is him after "force feeding"...yes, that's how I feel too!!!


But, On a happier note- He drinks out of STRAWS!!! He wouldn't touch ANYTHING but his bottle. We give him Herbal Tea in his Straw Cups. He gets cream in his bottle 1st (while he's starving or he won't touch it) then we give him his itty bitty meal. & tea to fill him up if he's still hungry!


Then I thought he was going to "READ" a book, luckily I had the camera ready...it looks like he's reading it, well, he was for 2 sec. still cute though :)

4.17.2010

WARNING: GERBER ONCIES!!


COLE STARTED GETTING A RASH THE OTHER DAY...IT CONTINUED TO GET WORSE...THE WEIRD THING WAS...IT WAS ONLY UP BY HIS NECK. I REMEMBERED WHEN I WAS PREGO W/HIM SOMEONE SAYING THEIR KIDS SKIN GOT STUCK TO THE IRON ON TAG ON THEIR ONCIE & THEY HAD TO PEEL IT OFF BECAUSE THE CHEMICAL BURNT ON TO THEIR SKIN. ANOTHER LITTLE KID GOT BLISTERS. IN THE PHOTO...I DON'T KNOW IF YOU CAN TELL BUT THERE ARE LITTLE BLISTERS EVERYWHERE!  (update: I called Gerber & can I just say...their customer service is awesome...they gave us the "new" updated oncies with less of the iron on tag...they work great and NO rash!  Thank you Gerber for the A+ customer service.  The new oncies are GREAT!)

HOPES & DREAMS...

SOME DAYS IT'S HARD NOT TO GET DEPRESSED WATCHING WHAT COLE HAS TO GO THROUGH ON A DAILY BASIS OR WATCHING KIDS WITH NO DELAYS. AND SOME DAYS I FEEL SELFISH THINKING WHY CAN'T MY KID TALK, WHY CAN'T HE WAVE TO ME OR POINT TO SOMETHING HE WANTS OR WHY CAN'T HE SAY "MAMA"....WILL HE EVER SAY "MAMA" WILL HIS MIND JUST ONE DAY CLICK AND HE'LL START TALKING OR BEING AWARE OF WHAT'S GOING ON AROUND HIM?? AND WHY CAN ALL THESE MOMS GIVE HANDFULS OF GOLDFISH TO QUIET THIER KIDS, AND ALL COLE GETS IS HERBAL TEA. WHY DO I LONG FOR THE DAY THAT COLE MAKES A MESS OF HIS TOYS, OR RUNS FROM ME BECUASE IT'S FUNNY OR BEGS ME TO BUY HIM A TOY. BUT...THEN I FORGET THAT IT'S THE "SELFISH" ME THINKING. AND THAT IT DOSN'T MATTER IF HE LEARNS TO TALK OR IF HE COMPREHENDS THE WORLD AROUND HIM. THE THING THAT MATTERS IS THAT HE'S MY SON AND I LOVE HIM EITHER WAY...AND THAT I AM SOOO PRIVILAGED TO BE HIS MOM. IS IT EASY??...NO. BUT, THIS IS HIS TIME ON EARTH TO TOUCH THE LIVES OF PEOPLE AROUND HIM...NAMELY MINE & ADAMS. I AM NOT SURE WHAT I AM SUPPOSE TO LEARN FROM THIS OR WHAT IT IS SUPPOSE TO CHANGE IN ME...AND IT'S OK IF SOME DAYS, ALL I WANT TO DO IS CRY...BUT IT'S TIMES LIKE THIS (RIGHT NOW COLE IS LAUGHING HIS HEAD OFF AT A PILLOW & JUMPING UP & DOWN!) THAT LIFT ME UP & MAKE ME FEEL LIKE THERE IS HOPE & MAYBE...JUST MAYBE...HE WILL BE ABLE TO COMMUNICATE WITH ME, HE WILL BE AWARE OF THINGS AROUND HIM, HE WILL GO TO COLLEGE, ON A MISSION, GET MARRIED...BUT, IF HE DOSN'T DO ANY OF THAT...THAT'S OK TOO.

4.11.2010

Q.S.BABY




I LOVE THIS LITTLE GUY. HE LOVES TO FOLLOW HIS SHADOW AND RUN ON THE GRASS...THAT'S ALL HE EVER WANTS TO DO IS RUN!! A WEEK AGO COLE WAVED FOR THE FIRST TIME (SINCE THE START OF HIS SEIZURES AT 10 MONTHS OLD) AT ONE OF MY FRIENDS. IT WAS THE CUTEST THING. IT MADE MY HEART MELT!! HE HASN'T DONE IT SINCE...BUT I HOPE IT RETURNS SOON :)

TODAY HE STOOD UP FROM THE GROUND ALL BY HIM SELF!! THAT WAS PRETTY CUTE TOO :) HE USUALLY USES THINGS TO STAND UP AND HIS PHYSICAL THERAPIST IS WORKING WITH US TO GET HIM TO STAND UP. SHE USES "TRICKS" BUT THERE IS NO TRICKING THIS LITTLE GUY. IT'S HIS WAY OR NO WAY. I THINK TAKING HIM OUT ON THE GRASS HELPS CUZ THERE ISN'T ANYTHING FOR HIM TO USE.

HE ALSO RAN OUT OF CARNATINE AND OUR INSURANCE SWITCHED AT THE SAME TIME...SO HE WENT OUT FOR A FEW DAYS. HE HAD MORE SEIZURES :( BUT, WE GOT IT FIGURED OUT AND HE'S BEEN TAKING IT FOR 2 DAYS NOW AND HAS BEEN DOING BETTER. STILL ABOUT 25 SEIZURES A DAY.