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10.24.2010

2 YEAR OLD ASSESSMENT (FOR DEVELOPMENT)

Cole is *SLOWLY* making progress. He is still SEVERLY delayed in his development...he is over 1 year delayed...and has pretty much stayed at a 10 month old developmentally (since his seizures have started-except walking and a few other things). Any small improvement we rejoyce in!

COGNITIVE(THINKING/LEARNING): 8-10 month range
RECEPTIVE LANGUAGE/COMMUNICATION: 8-10 month range
EXPRESSIVE LANGUAGE/COMMUNICATION: 9-11 month range
GROSS MOTOR: 18-20 month range
FINE MOTOR: 14-16 month range
SOCIAL-EMOTIONAL: 16-18 month range
SELF HELP: 14-16 month range

Cole is still not talking/babaling or using any words. Sometimes when he is mad & screaming...it sounds like he is saying MOOOOM! but I'm not sure if he is really saying it or not. Yesterday he actually said "YEAH" very clearly...but again...I think he just made the noise. We LOVE watching Cole run around the house! He loves trying to "run" into Gracie and he loves his drink. He downs 8oz of Stevia in 2 min. He still grinds his teeth (which drives us CRAZY!). He dosn't play w/toys...but will play w/his elmo toy, baby enstein light up toy and any remotes or phones. Cole still hand wrings (for self stimulation) but not as much as he used to. He CAN NOT tolerate being in crowds or loud places...so we don't really go anywher. He loves to swing and if we are bending over or sitting on the ground- he will sit or lean against us (it is SOOOO cute!). It's HARD to get him to laugh- and when he does it is a little peice of HEAVEN!!!

ANOTHER TRIUMPH!

Cole would NOT drink anything that was cold. It had to be WARM. This week...he has now accomplished drinking COLD stevia from the fridge...YEAH COLE!!! I didn't ever think he would make the switch! That crosses -1- think off my list (warming his drink up every hour). WAY TO GO COLE!!!

GENETIC TESTING #1

We had Cole's first genetic consult. Here's the protocol...the Dr. will do the "write-up" for a Chromosone Panel to see if there is a mutation in one of his genes & if it was a fluke or hereditary. We are starting with a Chromosone Panel 1st because there were some issues that we all "adding" up...

-my 1st ultra sound while pregnant revealed "missing artery" in the umbilical cord (DRS SAID HE WAS FINE)
-when he was born his tempurature was very LOW...he was in the special care unit for 24 hrs. they did blood work and didn't find anything. (DRS SAID HE WAS FINE)
-He had a SUPER pointy head when he was born (AGAIN DRS SAID HE WAS FINE & IT WOULD LOOK BETTER AS HE GOT OLDER) now age 2, and still...pretty pointy and flat in the back.
-He has a funny hair line and his hair dosn't grow very well all over and 1 inch above his ears.
-His head is actually SMALL...yes SMALL for his body. It seems that it would be "normal"...but nope!
-He does have a "thripple"...no...it dosn't look like the others, but it just looks like a scar.

WHAT THE DRS TOLD US, WAS THAT...IT'S OK TO HAVE ONE OR TWO ABNORMALITIES...BUT WHEN THERE ARE A LOT...IT SHOULD BE A RED FLAG.

After the Chromosone Panel we will the the SCN1A Panel (for epilepsy). It takes a LONG time to get the "Write Up" submitted to the insurance, then we wait to see if the insurance will cover it. Then get his blood work done...then wait again! about 2 months. I am not a patient person...especially when it comes to my son. But I am trying to KEEP MY COOL!

10.06.2010

SIGNING FOOD & USING RIGHT HAND

Cole dosn't always sign food. But when he does...it's awfully CUTE! He makes a fist w/one hand and uses his other hand to "help" the fist hand and beats it against his chin.



This is what Cole gets to eat....this is the WHOLE serving for 1 meal (4 times a day)


We have been working on getting Cole to use his right hand for MONTHS! He couldn't grab food...he is doing really well now (he can take it from our fingers, but can't pick it up off the tray *yet*)


BALL = MIRACLE!?!

Thankgoodness for CAMERAS!! Cole NEVER plays w/balls...but on this day...he did!!! I threw the ball in his direction to get his attention...not thinking he would pick it up...and ignore it as usual. But, instead...he picked it up. Not only did he pick it up, but he *also* decided to study it. Then, it popped out of his chubby hands...and what did he do?!? He followed to see where it went, stooped over and picked it up again!!!!!! I was quite taken back...this little boy NEVER plays w/toys especially not balls.

I TREASURE every new little thing he does...especially knowing he may never do that *one* thing again.
-this was about a month ago...and I can't even get him to look at the ball.

I know some of you may be annoyed at your kids getting into things, climbing/jumping on the counters/couches, making mess etc. but if I might give you my advice...ENJOY IT!! If my child did -ONE- of those things, you'd think I WON a million $$$. I pray your kids will keep being healthy and active...but sometimes things change in an instant. I will be forever greatful to the Lord for belssing me with a healthy/active baby for 10 months of his life. I KNOW joy and I KNOW sorrow...and I definatly NEVER thought I would HOPE for my child to make a mess of his toys, plead for me to buy him the newest toy that came out or color on the walls. But, in the same breath- he has taught me more about my self and my religion then I could have ever thought. I LOVE this little boy that is mine FOREVER.





A SUNDAY AFTERNOON

I LOVE Sundays!!! It's so relaxing with all of us HOME and not running to work/school/therapy/drs etc. etc. etc. Cole loves to switch off cuddling up to us...He SURE is a CUTTIE!!!


Cole likes to touch his tounge...it's kinda funny. One day he was tapping his tounge with his finger over and over for 30 min and ran around after he would do it.


CHECK THIS OUT! ...I THINK COLE WINS A PRIZE!!!

Adam took these pictures to show me how he found Cole afer a nap...He is COMPLETLY SOAKED!!!!