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If you would like to contact me, leave a comment at the bottom of the last post. I moderate all comments before they are posted, so if it has your email I won't publish it.
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1.29.2011

PROJECT FOR COLE'S MEDICAL FUND.

I love planning Cole's birthday parties...they totally excite me! A friend of mine had me do her little girls party...and her friends party. So I thought I'd try to make extra $$ to go toward Cole's medical bills. (which we might have to start fundrasing in the near future for a few genetic tests, if the insurance denies it again). For now, I am making Party Decore (which will be sent to you as a PDF file...then you print-cut-assemble them). You can buy the ones I've already done on the blog...or if you want something else...I can do that as well.

Check it out here:
http://personalizedpartydecore.blogspot.com/

1.17.2011

MEDICATION: DAY 7

We added the whole dose of Keppra (250mg) Saturday night. The next morning Cole woke-up and had 15-20 seizures in a row & very shaky ect. That is how many we "count" in a day! I wanted to SCREAM, CRY, FREAK OUT & LEAVE the country...but, I didn't. I calmly shuttered & thought to my self, "is this the Keppra!?, of course it is because NOTHING is going to be "easy" for us." 5 hours went by and I was still bugged by what I saw that morning. Then I realized the only thing different that I had done was brushed his teeth w/ the "Keto-Friendly" toothpaste...I was relieved that is was *probably* that!! Even though it's on the Keto list, dosn't mean it's for every Ketogenic child.

(I will be returning it back to the store...since it was $6!!!). This morning he woke up much better-less seizing. But, he has been having Night Terrors or something the past week...that's always fun! ...I am tired...I need a "tropical paradise" trip...anyone wanna join ;)

P.S.
on a good note, cole was at church & gave 2 little baby's "hugs" (he rests his head on their head). It was the FREAKING cutest thing I've ever seen...He saw one little baby who walked over by him and didn't even look at the baby and gave him a "hug", I was so suprised, I said "oh Cole! did you give the baby a hug!"...he smurked (while I was thinking he did it on accident)...he walked accross the room to the 2nd baby and did the same thing!!! I know he's in there!...I just need to prove it to the drs.

1.11.2011

MEDICATION: DAY 2

I sent the hubby to the store for groceries & this is what he brought back home...Let's just say it was a ROUGH day with Cole! And he TOTALLY deserves to eat it all!



We finally got the medication in him (with the help of "T's" expertice!)...we crushed the pill & put it in a suringe...instead of using water, we used his yummy drink that he can have to cover up the awful taste.

He was kinda out of it for the 1st 2 hours (while at hippotherapy) and then got home & ran around the house and then freaked out, so he went to bed. Then he got up & the hubby brought him to my work & he was FREAKING OUT!!! I figured out he was teething.....2 *big* molars, new medication & not eating his keto food makes for a BAD day for daddy!!!

1.10.2011

MEDICATION: DAY 1

We tried to give Cole his 1st dose of Keppra. We mixed it into his food and he took *ONE* taste...gagged & threw it up! He wouldn't eat the rest of his Keto meal :( We have a plan for tommorrow...stay tuned!

1.09.2011

WE NEED YOUR PRAYERS.

Just an update on Cole, at the end of this month...Cole will be on the Ketogenic Diet for 1 year now. The diet has helped about 75% of his seizures...now, we are working on the last 25% which will be quite a journey...with Seizure meds...it's not quite as easy as just "taking meds", it's quite more complicated with children and meds...(with your prayers & blessings, we are hoping that it will be "easy" or "easier") and that we will be able to find the right dosage and meds for Cole. This is a whole other world for us (as all the mom's w/Epileptic Kids know).

We will be starting Keppra this week (he will still be on the Ketogenic Diet since it has help quite a bit). Though, it will take about 1 month to fully start him on it. We will up his dosages accordlingly (with the help of the person in our last post!!).

We would greatly apprecitate your prayers for Cole. We are hopping he dosn't have bad side effects. This medication also causes children to have severe anger problems/behavioral...we are also praying that he his body will be able tolerate this medication.

Thanks for all of your love and support.


KEPPRA
What side effects can this medication cause?
•drowsiness
•weakness
•unsteady walking
•coordination problems
•headache
•pain
•forgetfulness
•anxiety
•agitation or hostility
•dizziness
•moodiness
•nervousness
•numbness, burning, or tingling in the hands or feet
•loss of appetite
•vomiting
•diarrhea
•constipation
•changes in skin color
TELL YOUR DOCTOR IF YOU HAVE:
•depression
•hallucinating (hearing voices or seeing visions that do not exist)
•thoughts of killing yourself
•seizures that are worse or different than the seizures you had before
•fever, sore throat, and other signs of infection
•double vision
•itching
•rash
•swelling of the face

1.01.2011

TENDER MERCIES

This last week a couple things happend that I thought I would jot down.

It started out with a very Special Family who has held our hand the last few days. We "officially" met their family on Tuesday. What an amazing family they are! They have a 5 year old daughter who has had MANY types of seizures since she was 2 years old. She has been on the Ketogenic Diet and ALL seizure meds including ACTH. They have seen/been through it all...however she's been seizure free for 13 WEEKS!!!

They were so gracious to us, on Tuesday we spent 3 hours at their house to help us figure out what to do with Cole. The next day, T. came over to our house for about 3 more hours & helped us "tweek" Cole's diet (even brought keto supplies- which are NOT cheap!). Then, they offered to watch Cole for us on Friday (we've never let ANYONE watch him since his seizures started-exept Grandma). She reassured us that she knows what to do with seizures, the ketogenic diet & ketokid's diapers ;) We decided to take them up on the offer and went out to dinner w/ friends. It was nice not having a screaming child (Cole dosn't do well with resturant settings & FREAKS OUT!). They have a very busy life w/6 children...and I am just amazed that someone would do ALL of that for our family! We've been praying for a long time for help (I've even thought, "I just need someone to hold my hand & walk me through this"). I can tell you that Prayer WORKS!! Heavenly Father LITERALLY sent this "Angel" to us to "hold our hands".

My other 2 things I wanted to jot down was on Friday we ran to get groceries. As we were grabbing the usually 4 cartons of whipping cream, the guy who worked in that area asked us if we were making Ice Cream. We told him it was for our son's medical diet. He grabed a couple of them and marked them to .50 cents, instead of the usual$2.75- I don't know if he was supposed to do that, but we were greatful for him in helping us out. That same shopping trip, we got Cole's WIC items. We try to do them all at once, but it ends up being 5 transactions. The guy behind us only had a Turkey, I told him he could go in frount of us. He said "it was ok", I reassured him it would take a long time because of all the transactions. He said, "thank you, but he was ok". I think he did that because he didn't care if it was a long wait, but knew the people behind him would be frustrated.

I am greatful for the people who have given of their time, efforts, generosity and love to our family. I hope to be able to pass that same love and service to others this NEW YEAR!

Here's to 2011!!!