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2.23.2010

THE MAYAN.







WE HAVEN'T BEEN OUT IN A WHILE...OR AT LEAST ANYWHERE 10 MIN AWAY FROM OUR HOUSE...SO WE WENT TO SALT LAKE FOR THE DAY. IT TOOK US 2 HOURS TO GET OUT OF THE HOUSE BECAUSE WE HAD TO PRE-MAKE COLE'S FOOD FOR THE ROAD & EXTRA FOOD INCASE WE GOT STUCK OR SOMETHING. WE HAD LUNCH AT THE MAYAN...IT WAS SOOO YUMMY! WE WERE ON THE 2ND BALCONY & COLE LOVED IT. HE ACTUALLY WATCHED AS THEY DOVE IN THE WATER. WE TOOK HIM DOWN TO SEE THE WATER & HE TRIED TO GET DOWN SO HE COULD GET IN. I THINK I'LL TAKE HIM SWIMMING SOON & SEE HOW HE LIKES IT.

COLE'S PLAY GYM IS BACK OUT!


The other day I decided to bring Cole's play mat back out (because it was one of his favorite toys). I pushed the music button & his face lit up and he squeeled!! That was the most excited I've seen him since his seizures. I think he remembered the music when he was a baby. He also played with it for awhile...which is AMAZING because he dosn't play with toys ever!! Cole is developmentally a 10 month old & I forget because he is walking & is a BIG boy...so I need to be better at remembering that & get him toys that fit his developement.

UPDATE ON THE LITTLE MAN.


Cole is over his cold...but he is still teething. He's got the 1st set of molers coming in...and it's NOT good on him or us! Cole has an unusually HARD time with teething then most kids (maybe because he is "over sensitive/stimulated"). He wakes up at 1am, 3am-5am & 7am practically EVERYNIGHT while he teeths...and his teeth come in SLOW...so it ends up taking about 1-2 months for 1 tooth to come in!!! And he CRYS all night long...even with Tylenol. And of course while he teeths he has more seizures and dosn't want to eat because it hurts...luckily for Ketocal he can just drink his meal (Ketocal is a formula already in a 3:1 ratio, so he dosn't HAVE to drink it all like he does his meals). He still has "less" then before the diet...so we are waiting it out in hopes that his seizures will improve.

"BEDTIME"

A few weeks after Cole started having seizures we started signing with him. I started with bedtime...but after a month of him not even looking at us I stopped doing it everyday and did it occationally. That was back in September/October. 2 weeks ago he patted his head while while fussing. He was clearly tired...so I put him down. Then last week he did again...and 2 days ago he did it right before bed. I didn't think he was intentionally doing it because he does "weird" things with his hands (like autistic children do) called Brain Stims (his therapist don't think he has autisim...but some brain damage from his seizures)....anyways, He did it at 9pm right before bed and we put him down, I was joking with Hubby that he knows the sign for "bedtime". Cole got up at 3am (like usual) and when he got tired he signed "bedtime" again. I was so EXCITED!!! But, I still think it's funny that he started doing it & I haven't signed with him for months! We will be signing from now on...even if it seems like he isn't getting it or even looking in our direction.

2.08.2010

TEETHING+SICK+NEW DIET = 2 BEAT-UP PARENTS.

How's the diet going?? It's been 2 weeks since he started the diet...but since last week he has been SICK, TEETHING & ADJUSTING TO HIS NEW DIET. So, EVERYTHING has been a BATTLE with him! But, on a good note...he's had fewer seizures (about 25 a day instead of 75-100 a day)! Hopefully his seizures will imporve when he feels better & isn't teething or sick. He also threw-up tonight (the 2nd time in his life throwing up...and both times in less then a month).

NAP TIME.

Cole fell asleep in his chair...I have to capture those moments cuz he usually only sleeps in his crib.


Cole got this cute little car toy while he was at the hospital. A guy makes them and donates them...it's called the Happy Factory. He also got that fleece blaket in the other picture.

We got Cole this teddy bear in the gift shop at the hospital. He LOVES it cuz it's soft like his beloved blankies...we call it his "Keto Bear" or "Bear Bear"

AND 5 HOURS LATER....

Cole gets 5 PLANNED meals a day...all weighed out to the gram. I pre-made 2 of the meals for a week...it took me about 5 hours...why you ask??? ...well, measuring to the GRAM is A LOT harder said then done...it's like a 5 hour GAME!!! opps...too much (take a pinch out) opps...too less (put a half a pinch back in)...SERIOUSLY...when one of the other mom's said she "would NEVER wish this diet on ANYONE, not even my worst enemy". And now it makes sence to me. I knew it would be hard...but HARD DOSN'T EVEN DESCRIBE IT...TIME CONSUMING DOSN'T DESCRIBE IT...FRUSTRATING DOSN'T EITHER!!!! But, it's ALL for Cole and he is what matters...so it's worth it!

I got these from babies r us & they are perfect for Cole's diet.
The spoons are silicone & makes it easier getting EVERY morsal out...yes, EVERY morsal he MUST EAT which dosn't sound that bad except that it is 5 times a day & a one-year old!
The bibs are great incase we miss his face...then we can still fish out the peice we dropped from his bib.

INITIATION OF THE KETOGENIC DIET.

(UPDATE: Cole was on the diet from January 2010-January 2011...his seizures went from 100+/day to 15/day...Cole wouldn't do the diet anymore...which was a blessing because we would have been satisfied with 15/day and wouldn't have found out what was wrong with him in February 2011)

Cole went into to the hospital on 1.25.2010 & was there for 3 days.

THE 1ST DAY:
-He BLED on EVERYTHING because one of the nurses didn't secure his band-aid on tight enough.
-Has his 1st 3 meals...then THREW-UP all 3 later that night.(VERY 1st TIME HE HAS THROWN-UP...EVER!!!)
-Since he threw-up, we gave him a bath...he can no longer use the Aveeno Baby we usually use (while he is on th diet because it contains carbs). We used Johnson's Baby Wash instead (which he's never used) and he got HIVES...while mommy get hosed down with the water from the nozzle!!!
-Then SCREAMED from 4am-8am because he was teething.
-and got his blood drawn & vitals checked EVERY 4 hours...even in the middle of the night.

THE 2ND DAY:
-Today was a better day...he ate his food...and got his blood/vitals taken every 4 hours.
-but, NO DADDY today...he was at school. It was BOARING for mommy.

THE 3RD DAY:
-YEAH!!! Daddy is HERE...no school today!
-Teething AGAIN!!! so he was screaming the whole time.
-Vitals & Blood work are good...
-TIME TO GO HOME...FINALLY!!!
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HERE ARE SOME PICS-

COLE'S YUMMY FOOD...LOOKS GOOD TO ME! I WISH IT CAME LIKE THAT ALREADY MEASURED AT HOME!

THE HOSPITAL HAD MATS WE PUT DOWN FOR HIM TO WALK/PLAY ON...INSTEAD OF THE YUCKY GROUND!...WALKING WAS THE ONLY THING THAT MADE HIM HAPPY.



DADDY WASN'T THERE ONE OF THE DAYS UNTILL 4PM...WHEN HE GOT THERE COLE WAS SO EXCITED...HE JUST KEPT STARING AT DADDY.







BY THE END OF IT...HE DIDN'T WANT TO BE TOUCH OR POKED ANYMORE!!!

HE FELL FAST ASLEEP IN THE CAR...HE KNEW HE DIDN'T HAVE TO WATCH OUT FOR NEEDLES ANYMORE!

COLE'S TOYS

(ACTUAL POST DATE: 1.22.2010)
COLE DOESN'T PLAY WITH TOYS & HAS NO INTEREST IN THEM WHAT SO EVER...BUT THESE ARE THE TOYS HE DOES PLAY WITH...ALTHOUGH "KIDS ON THE MOVE" IS STILL TRYING TO GET HIM INTERESTED IN TOYS.

PROCESS OF GETTING TO THE DIET.

(I AM STARTING A NEW BLOG-SO I AM TAKING SOME OF THE ONES I'VE ALREADY POSTED AND POSTING THEM ON HERE...SO SORRY IF YOU'VE READ THIS ALREADY!)

ACUTAL POST DATE: 1.20.2010



I just got off the phone with the insurance and they APPROVED the Ketogenic Diet for Cole!!! They denied it...and the drs sent in a ton of information to appeal it...Adam dosn't even know yet, he is at the temple right now. I can't even
EXPLAIN how much graditude I have for my Heavenly Father right now. I broke down and bawled as I was hanging up the phone and saying THANK YOU. THANK YOU. THANK YOU to the guy on the phone. I can't believe how "easy" it was for them to approve it...as we all know inusrance is never fun to deal with...& usually don't accept things the 1st time or so "fast" either.

When they had 1st denied it...I thought for sure we were going to have to pay out of pocket for it (at least $15,000)...and we came to the decision that if they didn't pay for it we would sell EVERYTHING of value...T.V, couches, our bed, dressers, hand guns...seriously EVERYTHING...and I just THANK my Heavenly Father...I owe him EVERYTHING!!! I am still in AWE!!!

(I Love you with all my heart Cole and would do ANYTHING in the WORLD for you!!!)

2.06.2010

COLE'S STORY

Cole was born in 2008. He was a happy & healthy little baby. One day (when he was 10 months old) I noticed for a split second that his eyes rolled back in his head. Not thinking much of it & thinking he was tired...he fell fast asleep. A few hours later he did the same thing...it was around nap time...again...didn't think much of it. The next day Cole was in his jumper and his head SLAMMED into the tray as his eyes rolled back...the next few days the "head drops & eyes rolling back" escaladed into HUNDREDS a day. He was sleeping for hours on end because of how much energy it took on his little body. FREAKING OUT...we took him to the drs asap. They sent us to the Pediatric Neurologist where they did an EEG. They diagnosed him with "A-tonic Drop Seizures" as well as "Stare Seizures". We set out for information on EVERYTHING. We decided to look at ALL of our options. We tried the B6 Vitamin Therapy & Fish Oil Therepy. It was working...not all the way like we had hoped...but it decreased the seizures as well as the harshness of them. He was no longer sleeping for hours after having 30 of them in a row. A few months passed & we felt like he platued. Back to the Nero's we went, and decided since he did so well we would skip the medications and go stright to the "last resort" as some call it...The Ketogenic Diet. (Which MUST be started in the hospital under a diatian & dr care...and to NEVER to be started on your own). We did have a hard time getting the insurance to cover it since he haddn't had medications before...but, with the help of MANY prayers...they approved it! Cole has been a Keto Kid since January 2010. And this is where our "New Journey" begins!

Cole has Global Delays from the seizures...before the seizures he used to point & say "mama & dada"...the normal 10 month old stuff. He is 16 months...dosn't talk, rarely babals, dosn't point and can not use his right side as well as his left (example: can't feed himself w/his right hand, etc.)...but, has started walking at 15 months which we were SO EXCITED & PROUD of him!!! He is a little trooper. Hopefully with the diet we can get his seizures to stop so he can continue to develope mentally & physically. He is also in Kid's on the Move (an early intervention program)...they help him with his delays and are AWESOME!!!!