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12.24.2010

BACK ON THE DIET.

We started back on the diet. Cole has been awesome...and eating his food like a good little boy. But, I am kinda confussed.

2 WEEKS AGO: before he was sick he had his normal "head nod" seizures (about 25 a day)

1 WEEK AGO: sick and off the diet, he was having 12 "head nod" seizures a day and 1/2 of them were the HORRIBLE "drop" ones...where he ends up on his back or stomach & a goose egg on his head.

THIS WEEK: about 40 "head nods" and a few HORRIBLE "drops" in the morning.

We have an apt with the dr. and dietitian next month (not till the end of course). So we will see. Hopefully his body just needs to get used to it again.
His ketones are only a 2+ on the keto sticks and they should be a 4+.


I'm not going to lie...it's been a hard week...I think because it's Christmas and I want Cole to be excited for toys and santa (no, not the important part of the Christmas...but it still makes me sad). I haven't felt like this since he started having seizures a year and a half ago...and I am desperatly trying to pull my self out of it...but it's hard when you don't know what the future holds for your child. You know that time when your "hanging by a thread" - yup...not so fun :( Not to mention the insurance denied his CGH Microray (genetic testing)...which we are going to appeal...but it makes me sick.
On the bright side, his laugh and smile makes me feel better. He's such a sweet little boy and I am so lucky to have him.

12.19.2010

SICK AND OFF THE DIET!

Cole has been sick this last week. He was throwing up for 3 days and diarrea for 2 days after. He started feeling better on Friday....and has been eating like a King (he's been off the diet since he's been sick)...It's been GREAT for us...I would rather have a vomiting/sick/crying little kiddo...then have to do the Ketogenic diet. It's been a GREAT week for us and a nice little break...but we are going to be introuble!

THURSDAY: he had his *FIRST* Saltine Craker EVER!!! (I'm not gunna lie...I was totally excited to feed it to him!).

FRIDAY: he had a string cheese, apple sauce and sweetpotatoes
(nothing was weight, no cream, no coconut oil etc).

SATURDAY: Pork chops, sweetpotatoes, applesauce, yougut, a WHOLE apple.

TODAY: WE ARE SCREWED!!! he had Bananna for the *FIRST TIME* and cried because he wanted more. Like I said, we are SCREWED!!! Tomorrow we will start him back on the diet...it's going to be HARD!!!

Since he's been off the diet...he's had less "head nod" seizures...but more of the "hard/forceful/throw you to the ground" seizures, those are the seizures we noticed that went away when we 1st started the diet.

Tomorrow is *GOING* to be hard...wish us luck!!!

Please pray for us to have patience and for Cole to eat/like his food.

12.13.2010

*LATE* Halloween Post.

This is a VERY late Halloween Post...and a Thanksgiving one is comeing also.

We took Cole Trick-Or-Treating even though he can't have any candy (it's for us...and yes, it helps us to feel better!). It was SO much fun even though he had no idea what was going on. He thought it was fun to be out in the dark/cold. He slobbered all over his "monkey paws" and they were freezing after. Luckily he didn't get sick.











12.12.2010

OXYGEN FOR COLE.

We finally got oxygen for Cole (for when he has a lot of clusters of seizures). Once its on...he dosn't mind it...but it's hard to get it on.


Cole never sits for books, but while he has the oxygen he will...I read stacks of books to him.

YEAH FOR COLE!

Cole has been doing so many things this week...I need to post them before I forget.

-RAN AFTER KIDS.
Yes!! I couldn't believe my eyes...he usually dosn't even agknowlege other kids around him, but yesterday we were at a family party and 4 little kids were running and laughing (following eachother), Cole watched them, took off after them and started laughing! Then he got distracted by the christmas lights & went into the "zone".


- GOT UP ON THE FIRE PLACE MANTEL.
then decided he should stand up & we would sit him down-then he would stand up- we would sit him down...over and over again.


- WENT UP THE STAIRS *all* BY HIS SELF (almost all the way).
He always wants to stand up and lean back--and he still didn't understand that it just won't work that way. He was crying for me and saw I wasn't comeing to get him so he decided to try all by himself (I was only 1 stair away incase he decided to stand)


- WENT DOWN THE STAIRS *all* BY HIS SELF.
Again, he always wants to stand on the stairs, but dosn't get gravity & throws his body forward...we taught him to scoot on his bum. But, he still trys to stand so we have to be right by him. It only works if we grab his hands each step and put them at the edge of the step.



-DRINKS WATER!!!
I thought this day would never come...the water has to be warm...but he will drink it!

We Love you little buddy and are SO proud of the things you've learned!

DECORATING PROJECT!

I LOVE decorating. If I had more $$ I think I would do it more often! I bought this awesome hutch off KSL for $35...then refinished it black (w/the help of my hubby!). I wasn't in love with it...but I wanted to be in love w/it. So, I went to Tia Pan and bought some accessories and spent $30. I had some stuff already...like the picture frames and the yellow candle holders (except they wern't yellow...I painted those and the frame yellow)...NOW...I am in LOVE! The clock I just so happen to find while in St.George- retail:$80 Sale:$17!!! they had a Grand Opening sale...they were flying off the shelfs! Thanks for the help babe! *mommy's smile: Price less!*



















11.16.2010

GENETIC TESTING #2

Well, after putting up a fight (hopefully!) Cole's "write-up" to the insurance for the CGH Microray should HAVE been submitted yesterday!

It's been 6 weeks since we 1st met w/the genetics dr. Who said after we met "if you don't hear from me in 2 weeks, get a hold of me". So I tried to get a hold of her for 2 weeks, then 3 weeks, then 4 weeks...and I was going to LOOSE it! But, I've been trying to rely more on the Lord and keep my cool...and that is when things pay off! Seriously, when you do it the "Lord's" way, things get done! I was able to talk to the person over the Genetics Dept. and she called the dr (even though she was on vacation or something) and the Dr. was very appologetic to the "person on the phone". That lady was an ANGEL! Instead of being like the other 100 people I talked to (transfering me to other people, or to voice mails etc. and giving me the run-around) she had compassion for our situation and made things happen!!! So thank you to that lovely lady who helped!

11.03.2010

I LOVE LOVE LOVE this video's (by Jeffery R. Holland). I like to watch it...it gives me PEACE-HOPE-LOVE-STRENGTH which I desperatly need!!! I hope you can find peace and comfort from this video as well. (PRESS PAUSE ON THE PLAYER AT THE VERY BOTTOM OF THE BLOG)

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!!!!



9.26.2010

COLE'S 2ND BIRTHDAY PARTY!!!

I've been planning Cole's 2nd Birthday Party FOREVER!!! I was SO excited to figure out what I wanted to do and my lovely sister helped bring it to life with the CUTEST spider cake ever! I decided to do "The Itsey Bitsey Spider"...then I made the banners and cookie tags. I also made YUMMY Sugar cookie "Spider Webs". Even though Cole couldn't eat anything...I wanted to do this party for him because I LOVE him so much...and I wanted to have a Celebration of another GREAT year with him. He has brought so much joy and emotions I can't explain and I am so happy he is in our family.

Cole- We love you so much and you make us laugh. You are so cute and cuddly...and we wouldn't have it ANY other way!!!
















9.13.2010

4:1 Ratio

August 30th we went to Primary Children's for Cole's apt. We got the blood work done to see if he can move up to a 4:1 Ratio. After a long day of....his blood work was lost (so we would have to go all the way back up to Primary's to get it re-taken...which is a lot for us, because both Adam and I are on opposite scheduals for work and school...which means that I would have to take work off again to go up and it takes about 4 hours out of our day to go up there (drive time, find a resturant while up there so we can warm cole's meal up etc., plan it around cole's naps) Anyways, we also had lost paper work and issues with everything.

They ended up finding his blood work...and he was low in carnitine, vitamin D & his tryglicerides were high...so he needs more fish oil. Here is his protocal for vitamins:
3 drops Vitamin D
5 ml Fish oil
8 ml Carnitor
1/8 of Lite Salt
1/4 of Salt
B6
Magneesium
2 scoops of Nano VM-
worst stuff ever! Cole hates it, we mix small amounts into his food because it is so calky and gross. Try getting that into a 2 year old!

They approved him to move up...this is the last time he can move up in ratio. If moving his ratio up dosn't work, then we will think about add in meds (which is not a fun thing with Drop Seizures)or the Vegal Nerve Stimulator which is a battery pack surgically implanted into his chest w/ wires that run to the nerves.

We are going to wait to add anything new until we get results back from Genetic Testing. We have an apt with the Geneticist next month.


We like to stop at the bakery after we get done at the hospital. We need SWEET's to make us feel better. This is what happens when we are sad...A HUGE PLATE OF COOKIES AND SOME CHOCOLATE CAKE!



Cole was so out of it...I think it must have been a mixture of getting his blood taken & sleep deprived. He kept falling asleep...but every time his eye's would close he would laugh so hard (with out taking his thumb out). He did it for a LONG time!

8.25.2010

LEAPS & BOUNDS

I don't take Cole to nursury very often (Daddy and I usually trade off going to church because Cole NEEDS to take his naps or he will have more seizures) but this Sunday he woke up late and he was able to make it to Nursurey. One of the little girls (who is 1/2 the size of Cole) saw Cole's sippy cup and tried to give it to him...instead of taking the cup Cole put his arms up to her so she could "pick him up". Later, Cole walked up to the table where the little girl was playing with legos and he saw a YELLOW and RED lego sitting on the table. He studied them for a sec and picked one up. Then he held it and studied it and picked the other one up. I know a lot of parents wouldn't really care that their kid picked up a lego...but I was pretty excited! The fact that he showed interest in something was awesome to see. He also picked up a train a few times. Another little boy handed Cole a car and Cole took it from him! (he usually pushes everything away). It's funny because Cole is huskier and bigger then most of the kids in the nursery, but all of the kids treat him like he's a baby (which develomentally he is) but, it's almost like the other kids know Cole dosn't know what they know.
If anyone wants to have play dates...let me know...we need other kiddos around and I am sure not having any anytime soon!

8.08.2010

ONE YEAR ANNIVERSARY.



It's been ONE-Year since my little "Mole" started having seizures. I didn't think he would still have them...I know...kinda a nieve thing to think...but I was nieve to seizures. Now, I know a lot about seizures. It's definatly changed our lives, though I still wouldn't trade it for anything...even through the tears, force feeding and tantrums. I still feel like I'm dreaming. and still, the HARDEST thing about everything that has happened is Cole's developement. It's sad not see him doing things he should be doing...but, the little things that I think I would have taken for granted...I get so gitty over and I feel like I won a million dollars. Just like 5 days ago...Cole climed up his 2 step stair that daddy built for him and got on the couch ALL BY HIM SELF (even though I was running toward him in sheer panic thinking he was going to fall like usual. That same day he also got OFF the couch all by him self...with me running toward him in sheer panic once again.

I think what I've learned this past year has been compassion (especially toward parents w/ children w/special needs...because it is NOT easy, I really had no idea what those parents go through...and I sure never thought I would have found out). I've also learned to be more patient, and I think I *LOVE* this child even more...in ways I didn't know I could. I've got a Beautiful little boy and it's all that matters!


Seriously...is that not the funniest/cutest face EVER!

8.02.2010

COLE'S 1ST KILL


A few weeks ago Cole was at my work. He loves to dance on the Quiksilver mat in the frount of the store. Cole looked down...watched a Grasshopper hop 2 times, slowly bent down, picked the Grasshopper up, squish it a few times and tried to put it in his mouth. Luckily Adam was right there and he smacked it out of his hand. Even that would have screwed with his diet...had he eaten it! Kinda funny that Cole picked up a Grasshopper so easy, but can't pick food up that well...and that was even with his *RIGHT* hand!!! (although, he is getting better with his left...not so much the right)