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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!*