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.



All though Cole doesn't have to wear his helmet for Epilepsy anymore (however, we recently started putting it back on him because of his anger issues and head banging)...there are others who are looking for Epilepsy helmets. We've been through 3 helmets already...and they are VERY expensive. Some insurance help pay for them, others don't. So I thought I would share my "secret" of where I got mine since they were SUPER cheap (these same helmets usually run $150-$300 and if your insurance pays for "some" they will cost you about 50% of the cost...I bought all of Cole's for about $50-$60! This is the company I have ordered from & they are great: Kid Safety Hats. These are the ones we've had and they are my favorites, I like them because they have great coverage for the "drops" and are very light weight & can't be pulled off!

Thudguard: $47
(Cole used this one when he started seizing at 10 months & wore it till he was about 20 months.)

Playmaker Headgear: $54
(Cole used the "x-small" from 22months-3years...he can probably use it for another year. We also got the size "small" which is the next size up...we don't need it now...but his school needed one with him so we got another which he uses for his anger issues!
I hope this helps save someone money like it did us! ...better yet, I hope you figure out how to stop the "Beast" so you or your child can be helmet FREE!



Cole has been a bit of a "rage-a-holic"...again! I'm pretty sure it's the Keppra...again! I talked to the his Nurse at the Cleveland Clinic to see if they might change his dosage, but the WON'T make any changes for 1 year because he *IS* doing good. I totally understand, but it's getting frustrating with Cole pounding his head on the Kitchen Tile & head butting our noses/faces, biting the counter top, us and anything else he can get his little teeth on & pounding his fist on his head. He does this all-day-long...and no, this is not just a "tantrum" because of his age etc. It really does have a name, "Keppra Rage"...and it is VERY different then what UN-medicated kids go through. (I know there's a lot of parents who know EXACTLY what I'm talking about with the "Keppra Rage"). It's almost like it makes them psychotic...I'm not even kidding! It's so bad that he has to wear his helmet again, that little head of his cost about $300,000 this year, so we are defiantly protecting it.

But, on a good note, Cole has been doing new things & babbling again since he's been on Christmas break. He stopped babbling when he started school and now that he's home he's doing it again. I think pre-school might be too much for his little brain and so he just shuts down. Right now, we are working "self feeding"'s a video to show you how much fun it is!!!  ...not really though.
(turn off the music at the bottom of the blog first.)



Back in February when we did our first fundraiser for Cole, there was a 5 year old little girl who had a prosthetic leg (when she was an infant she had a bone disease in her leg, her mom had to decide what to do. She decided that she would have the leg amputated in her daughters best interest. Oh, how I admire her...I know how scary it can be making an important decisions for your beloved child). Anyways, this sweet little girl was at the bake sale. She went home & came back with ALL of the money she had been saving. She went to Cole's donation box, reached up & poured every cent she had into Cole's box. This little girl gave Cole EVERY penny she had.  I think about it often...knowing how much this little girl loved my son to give up every cent she had.  There was another family whose children (whom we didn't know) told their mom that they wanted to have a yard sale to sell their toys so they could raise money for Cole.  And a 3rd of my co-workers 8 year old son sent money to work with her, to give to Cole. And 2 other little kids (whom we don't know) who live in Florida, did a small car wash for Cole. King Benjamin says to "become as a child—submissive, meek, humble, patient, and full of love" (Mosiah 3:19). These children taught me what the really means.

Today, by no coincidence, I heard this talk by Elder Kent F. Richards (who is a surgeon)..."I have noted that children are often more naturally accepting of pain and suffering. They quietly endure with humility and meekness. I have felt a beautiful, sweet spirit surrounding these little ones. Thirteen-year-old Sherrie underwent a 14-hour operation for a tumor on her spinal cord. As she regained consciousness in the intensive care unit, she said: “Daddy, Aunt Cheryl is here, and Grandpa Norman and Grandma Brown are here. And Daddy, who is that standing beside you? He looks like you, only taller. He says he’s your brother, Jimmy. (Her uncle Jimmy had died at age 13 of cystic fibrosis). For nearly an hour, Sherrie described her visitors, all deceased family members. Exhausted, she then fell asleep. Later she told her father, “Daddy, all of the children here in the intensive care unit have angels helping them.” To all of us the Savior said: “Behold, ye are little children and ye cannot bear all things now; ye must grow in grace and in the knowledge of the truth. “Fear not, little children, for you are mine...“Wherefore, I am in your midst, and I am the good shepherd.”

Isn't that SO COOL to hear! I love hearing things like that. It lightens my frustrations, my sadness and heals my broken heart. Elder Orson F. Whitney wrote: “No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude, and humility. It is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire.”

If you know me, you'll know that I am a "planner"...I like to have my ducks in a row and a plan for the future. I want to make sure that Cole's medical needs will always be taken care of...but that is impossible to do...things change, the economy changes, insurance plans change, job's change & when I start thinking of every POSSIBLE scenario I *PANIC* heart feels like it's about to pound out of my chest and I feel like I'm about to have a heart attack! But, looking at the big picture reminds me of what's important. If you want to watch or read the rest of Elder Kent F. Richards talk, go HERE.




It's 2am in the morning and I can't sleep.  My stomach is turning.  I get really bothered around the holidays.  It's a REALLY hard time for me.  For most kids Cole's age, it's full of fun, excitement and Santa.  For Cole, it's just another day of frustration, not being able to talk or communicate, he has no interest in toys (except for a few "infant" toys, but it took a really long time for him to even "like" them), he doesn't get to have a "concept of Santa".  I wish he could be excited Christmas morning and run into the family room to see what Santa brought him.  It might seem superficial.  But it REALLY hurts.   Seriously, it's 2 am in the morning and I am crying about my 3 year old not understanding Christmas...and then I start wondering what's wrong with me. I don't like waking up Christmas morning...who doesn't like waking up Christmas morning?!?  I wish I could go on vacation to a warm, sunny place this time of year so I could just skip it all...however, that isn't an option since I work in retail and it's the busiest time of year.  But, I do have to say how thankful I am, and that I *DID* get the best gift I could POSSIBLY ask for...Cole not seizing.  Many parents are still fighting the "fight" year after year for their child.  I know some parents haven't been as lucky as we have in that area...and I am humbled by that.  Last Christmas that is what I wanted...and yes, I remember that...I distinctly remember last Christmas, saying a prayer...bawling my eyes out, PLEADING with the Lord to let me help Cole and for him to become seizure-free.  It's been an amazing & incredible year.  I feel really selfish for the way I feel about "Christmas", because how many people get to say that they "witnessed a miracle in their own child".   I think it might always hurt every Christmas morning (& the weeks leading up to Christmas) because my mortal mind wants me to "want" Cole to have everything and to succeed in life...and it definitely "puts me in my place".  But, I just have to remember that his "succeeding in life" will be different then his peers...and that's ok.  I think it might be part of the grieving process...some people think once you've gotten through that part, your good to go. But I am ALWAYS going to want the best for Cole and I will ALWAYS want him to overcome the things that are hard for him to do...and so, it's a lifetime of grieving at every stage, and A LOT of rejoicing of what he overcomes.



I made little treat bags with Truffles in them for Cole's teachers this holiday.  Want to know how many I made???  12, yes...Cole has 12 "teachers".
2 Preschool Teachers
3 Aids
1 Occupational Therapist
1 Physical Therapist
1 Vision Specialist
1 Speech Therapist
1 Bus Driver
1 Bus Driver Aid
1 Awesome Baby-sitter
These important people make a HUGE difference in his life and we are SO grateful that we live in a place that has services available to special little kids! 



Cole never got sick before going to preschool.  He never had the flu, never thrown-up...nothing! (except for a few runny noses and coughs).  Now that he's in preschool, it seems like he's sick all the time!   Before preschool he was NEVER around kids...only a few of his nieces an nephews...but not for a long time.  We had to keep him healthy because he was on the Keto-diet and if he was sick then he'd have more seizures...then came his surgery (dated for June but ended up happening in September) and we made SURE he wouldn't get sick before or after the surgery.  Now that we aren't playing "mystery diagnosis" and trying to figure out how to stop the "S-monster" he's been around lots of kids and in-public.  Since preschool he's had a constant runny nose, a bit of a cough,  throwing up and diarrhea.  I think he's immune system is trying to get used to these yucky germs.  I am pretty clueless when it comes to "normal sicknesses" but, when it comes to Brain Surgery, MRI's, EEG's, Seizures etc I'm a walking text book!



I am honored to say...Cole's Blog made "The 35 Best Blogs for Epilepsy" list!  Pretty cool huh?  Here's the list if you're in search of some more Epilepsy Blogs.



Today is Cole's 3 month anniversary of his surgery!  To celebrate...daddy & I are going on our 1st "movie date" with out Cole, since December 2009 (we brought him with us to that one).  Yes, it has been that long since we've been in a movie theater.'s hard being a parent of a child with seizures...I hope to never have to deal with them again, though,  I can sympathize with the parents that are currently dealing with it.  It's defiantly one of the harder things in life to deal with...though, you still have to "try" to live life and make the most of it.  I TRULY commend the parents whose children's life have been handicapped by those PESKY-HORRIBLE seizures...and those that have special needs children.  Being a parent to these children are not usually coveted & it takes MUCH time, money, resources, energy & everything you live for, to raise these special souls.  I know we will be compensated by our maker for what we've "lost", the things our children were never able to experience or the things we never got to see them do.  I've had some hard times accepting what is to be (especially before finding the Cleveland Clinic & not knowing what was wrong with Cole).  Do you want to know what helped me?
"The Lord compensates the faithful for every loss. That which is taken away from those who love the Lord will be added unto them in His own way. While it may not come at the time we desire, the faithful will know that every tear today will eventually be returned a hundredfold with tears of rejoicing and gratitude."
This is an AMAZING talk by Elder Joseph B. Wirthlin, called "Come What May, and Love It".  This talk ironically came out a week after Cole was born...before we knew anything that was to didn't mean as much to me as it did after Cole's life changed.  When I need perspective or a little comfort...I read or listen to this, it's gotten me through some though times.  He talks about a grandchild he has that is autistic.  If you need comfort you can Read Here...Watch SHORT version here...or watch the FULL version: (turn the music off at the bottom of the blog 1st.)



When we found out Cole was going to need surgery back in March, I researched everything! During my search, I found this cute little lady...Charlie Claire who had surgery a few weeks prior. Charlie Clair has a twin brother!  You can click on her will take you to her blog.  Anyways, after finding her blog, I got in contact with her mom and it was so nice to have her there for us cheering us on and giving us advice before, during and after the surgery...because let's face it...nothing can prepare you for what your about to experience....but step by step (along with John's mom and Noah's parents!)...they walked us through this journey we were facing.  Charlie Claire had surgery back in February...however those pesky seizures came back because a very small piece of malformed tissue was left, which couldn't be seen because her brain was so swollen near the end of the surgery...Charlie Claire will be having a 2nd surgery (hopefully the last!) on December 7th, in hopes to become seizure free.  Please pray for her...we also hope she won't get sick so she can have her surgery as planned.  There is so much too worry about in preparing for a big surgery like this.  We love you Charlie Claire!!! 
P.S.  if you need some new lip gloss...go to Charlie Claire's blog, they have Artistry lip gloss (that has a mirror & light on it...pretty amazing if you ask me!)...the proceeds go to Charlie Clarie's medical fund!
P.S.S.  Cole signed "more" today day at school so he could get more goldfish crackers!



We were excited for Cole's first "real" Thanksgiving this year (the 1st: he didn't eat food yet & the 2nd: he was on the Ketogenic Diet), instead, Cole was throwing up and sick most of the week. Luckily daddy had Thanksgiving & the weekend he was able to take care of him while I was at work...perfect timing on his I didn't have to use sick hours and miss work! Maybe he can catch Thanksgiving next year.
...And, to get into the spirit of Christmas...our good friend who is an amazing musician (and so nice to perform at Cole's benefit concert earlier this summer) has a FREE song that you can listen to & download called "That Spirit of Christmas" ...enjoy!



Wow! It's been 3 months since Cole's surgery.  The 10 days he was in the hospital, really seemed like we wouldn't be able to leave...every day seemed to get worse and worse.  It was an adjustment, but AMAZINGLY worth it!   
Here's a run down of the pre-op & post-op of changes in Cole:
  • Cole no logger needs to wear his helmet (because we haven't seen any "S"s!).
  • instead of staring at the ceiling, Cole actually looks at us! 
  • figured out how to crawl (he didn't crawl much, so he's going back to learning at a 10 month old level)
  • he doesn't "hand wring" or do brain simulations like he used to.
  • starting to babble.
  • plays with toys a little more.
  • we don't have to take his stroller EVERYWHERE anymore! (we used to have to take it everywhere, even to church!)  His brain couldn't process walking from the car to the front was too far for him.  Now, he always wants down & loves to run, run run! 
  • he gets on the couch ALL BY HIMSELF!
  • is super happy now & doesn't seem to cry like he used to.
  • holds our hand.
  • pays attention to the dog.
  • rubs our arms.
  • responds when his name is called.
  • climbs the stairs.
  • starting to give "high five's"
  • he gets "scared" now.
  • can tolerate loud noises (not always, but MUCH more then he used to!)



Today was my first day back at work from taking 11 weeks of medical leave for Cole's surgery.  We are SO lucky to have an amazing family watching Cole!  It's perfect because they are in our the bus picks him up and drops him off at their house. couldn't have worked out any better!   The day went REALLY well...except when Cole came home on the bus with a mouth full of wood chips.  Cole's baby-sitter went to get him off the bus and the assistant on the bus was trying to get them out of his mouth...luckily our wonderful baby-sitter sprung into action and got all of them out...scarey!  I am not sure how long he had them in his mouth for...but I'm so glad he didn't choke on them.  Cole is fast...and he's like a "walking 10 month old"!  On the way to work I prayed that Cole would be safe at school, on the bus and at his baby-sitter's...I don't typically pray that he will be safe on the bus, but today I felt different, and felt like I needed to pray for him to be safe in those specific places....and I'm glad he's safe!



I've had people asking questions about Cole...and for videos of, here is a video & the q&a part I will try to get to soon! The is a video of Cole going up grandpa & grandma's stairs for the *FIRST TIME* since his surgery on October 26, 2011.   Enjoy! I'll try to post more soon.



I love this little boy so much! It is so crazy how much he has changed in the last 2 1/2 months since his surgery! He is ALWAYS smiling now...before the surgery it seemed like he was always crying (I guess I would too if I was having 150+ seizures a day). When he was a baby (before the "S"s started) he was SO happy....always smiling at EVERYTHING & ANYTHING! It was REALLY hard to see him change practically overnight when the chaos began. But, it's been REALLY fun watching the "new" and "good" changes that have come since his surgery. He looks so grown-up now!
My mom got Cole this little toy that sounds like a bird when you shake it. She got it for him a few years ago, he would NEVER play with it...sounds were way too much for him...he's been "playing" with this like crazy...he even learned how to shake it all by his self!!!
I love Cole's teachers....they send this green page home every day to tell me about his day...
He got home from school the other day and was so happy! Everyday, I go to grab him from the bus and he gets SO excited to see me and ALWAYS has a smile on his I even got a clap when he saw me!
And, last but not least...I FINALLY get to do his hair!!!



(look how SWEET this banner is....I think it's AMAZING!!!)
Today, Quiksilver in Lakewood Colorado held a fundraiser event for Cole. I CAN NOT thank you enough for your help and hard work!!! guys are incredible.  I know how much work goes into these fundraisers and they aren't easy...I really appreciate you guys! Thank you SO much for your Love & Support towards our family...especially Cole. It means SO much to us!  I also want to thank each of you who donated items to the auction as well!  ....Casey, you are AMAZING!!!
Special thanks to the donors and sponsors!!

*Love, Cole's Family* 



 Remember Cole's friend "Little John" who went to the Cleveland Clinic last November!?! If you don't remember, Little John had a malformation  causing  A LOT of seizures just like Cole.  He had surgery one year ago (by Dr. Bingaman)...John went for his 6 month check up back in June and his EEG was becoming normalized, but wasn't quite normal yet.  John JUST had his 1 year check up...and after being seizure-free for for 1 year...HIS EEG IS NORMAL!!!!  This is AMAZING news & I am SO happy for them!  Read his story here.   When Cole goes for his 6 month check-up...if he still hasn't had any "S's"...his EEG will likely not be normal...but we are praying Cole will follow in John's footsteps for a normal EEG & no "S"s!  Way to go Little John...we LOVE you buddy!



Cole was a cute Little Monster for Halloween this year. He got to wear his costume to school!
He looks like he's totally into Halloween...but he didn't really care, he was just happy!
Check his hair is so long now! & his scar looks SO good!
We took him trick-or-treating with his cousins.
He didn't understand what we were doing, but it was still fun!
Cole doesn't like candy or sweets (I think because he's never really had it...and he COULDN'T have any when he was on the Keto-genic diet), We gave him a cupcake for his birthday and he was screaming because it was in his we swooped it out. I thought I would give him some of his chocolate I was eating...bad idea! At first he seemed like he didn't mind it, but the more he tasted it, he started to gag and threw it up...just from a tiny piece. I wonder what it tastes like to him...because it tastes delicious to me!



We finally went on our *FIRST* real date since Cole started seizing, yes it's been 2 years!!! And yes, it probably wasn't the "healthiest" thing for our marriage, but you do what you do, and you do what you don't...and that...we didn't do. It was too hard to leave him and we only left him out of necessity to go to work. We've gone on dates, but Cole has always "chaperoned" us. We celebrated our "anniversary" 1 month early since I will be going back to work soon (right now I'm on medical leave) so we wouldn't have time to go out once I go back to work. We went to FINALLY see Thriller (the musical). I've been wanting to see this for 7 years! did not disappoint! We also went to eat at Maxwell's was the best pizza ever! Thanks for the fun night Dan & Chanel.
...sorry Dan...I'll have to photo shop you into the photo!
We got home at 11:30pm...we missed Cole so much we went and got him (he was already moving around in the video monitor).



Cole went to preschool for the first time! Because he is "special needs" he gets services through the school district.  He qualified for EVERYTHING...even OT, PT, Speech Therapy & Vision services. Each therapist will work with him once a week (any where from 10 min to 30 min a week).  Which is good because we found out the insurance won't cover ANY of his therapy!  And of course we found that out AFTER we had taken him 3 times which means we get to fork out $1500 for the 3 times.  (that was different therapy then the intensive rehab we were doing).  Had I known we were going to have to pay for all of that...I could have taken him to "Now I Can", the intensive therapy that has worked wonders.  But, an AMAZING family was SO nice to donate money to Cole,  so we could do a few sessions at "Now I Can"...Thank You!  We REALLY appreciate it. (I will do a post on his Therapy later).  Out of all the therapies we have tried...I have to say "Now I Can" has been the BEST for Cole! Anyways, back to Preschool...I was so sad, but SO happy that he has an opportunity to get an education and services. I LOVE his teachers. We almost had to switch schools, but I wasn't liking how I was feeling about the, we stayed! 
Cole's day started out like this:
Wake up at 8:20am, eat, get ready and head out side to wait for the bus by 8:45am
He was excited we were out side.
Then realized something was happening...and started crying (seriously, look at this face! it's so sad).
Cried even more...
then decided he was outta-here!
He finally calmed down.
We patiently waited for the bus.
We grabbed his bag (or *I* grabbed his bag).  
He won't wear it & doesn't understand what it is...he's good at letting it fall off of his shoulders,
I carried him on the bus & they strapped him in a harness...poor guy looks terrified!
He cried the whole way...I met him at school & watched him the whole time.  He did pretty good as long as he was being held or fed.  It was a little daunting watching him in a class of kids his age (some with delays & some w/out delays) and see how far behind he is.  But, with Cole going 4 days a week & 3 hrs a day...I think it will do wonders!  I am SO excited for him to be able to have these services available to him through the School's such a blessing. 
Cole didn't know I was in the class...even when I think he saw me, I don't think he realized I was there.  But, once he came home on the bus...he was SO happy!!!  ...see his *cute* smile.
Cole has been doing so good the last few days.  He babbled "mama" & "dada" for the *FIRST* time since he started having "S"s at 10 months old (I really HOPE it sticks around!) But oh, to hear that...I can't even tell you how it felt!   It also sounded like he was saying our dog's name & following her around.  I REALLY can't believe how far he has come.  He was even "playing" with some of his toys he's NEVER played with!  Oh, by the way I need to thank his friend "Savy" for getting him that toy phone...he takes that thing EVERY where and clutches it in his hand against his the shopping cart, at home, at calms him down when he has melt THANK YOU!!!



It's been 7 weeks since Cole's surgery and it seems surreal! Looking at the pictures, I can remember what he smelled like and the feeling in the was both a weird smell & a weird feeling...but the feeling & smell of hope & "a new life".   The past 2 years of what Cole has gone through and how far he's come has been to much to fathom. Going from 150+ seizures a day to 7 weeks of not seeing "any" is a HUGE accomplishment for Cole...but we have 6 more years of "holding our breath" to see if the surgery worked fully. He's doing SO good. He has come a long way. He is starting to do things I've only dreamed of and thought I might not ever holding our hand from the car to the front door of the house. Last week we got to go on our *First* walk with out the stroller!!!! He held our hand all the way around the block. He tried to reach for the light switch today also. I can't help but thank my Heavenly Father to let me witness the many MIRACLES of my *own* son. If you are wondering if Christ exists...I TESTIFY to you that he *DOES* exist, he is VERY real....with *EVERY* fiber of my being, I know that he exists. Because of Christ, we are able to experience & witness miracles both big & small. There were many times when I begged & pleated to know "why us", "why my child" and I begged to make it go away. There were days when I felt like running away to a deserted Island with my family so we wouldn't have to feel the pain and think of the future...thinking of the future freaked me out. I now know that it was for my benefit, to help me and my family grow in ways that we wouldn't have been able to, and so I could relate to those that are suffering. Some people have asked me how I've gotten through the eye dr the other day...he asked me, "so how are you so up beat about life?" I laughed and wasn't going to say anything...but realized he really did want to know. Well, a lot of people have asked me, so here is my answer...Mosiah 24:14 the Lord said "And I will also ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage; and this will I do that ye may stand as witnesses for me hereafter, and that ye may know of a surety that I, the Lord God, do visit my people in their afflictions". I am here to tell you that it is TRUE! I was telling "daddy" after Cole finally healed from his surgery, that is "was like someone literally picked us up, placed us at the Cleveland Clinic in February and parted the way for Cole to have surgery. I don't even know how it was so easy to get Cole admitted and insurance stuff in place. It's been one amazing and crazy journey...I know it's not completely over, but I feel at peace and hope for the future!



Sorry, I know it's been awhile since I've blogged...I've been gone ALL day long the last few days to Drs apt & therapy apts...Cole started intesive rehab this week and we LOVE it (a post is coming on that!) and Cole gets to have glasses now! Anyways, on to the party, I LOVE parties...and thanks to my friend, Katie, I was able to do this *cute* Car's Party for Cole and borrow EVERYTHING from her! All I had to get was the treats and food. This was Cole's first "friend" party. I loved being able to invite all of his little friends (which I missed getting photo's of most of the kiddo's) but it was fun to celebrate ANOTHER year of Cole's life...especially this year...and right after his surgery. I can't wait to see what the next year brings for Cole! This year...we didn't get Cole an actual "item" for his birthday...but we did get him a trip to Cleveland & Brain Surgery for his birthday this year (which was quite pricey compared to most birthday gifts!)...I hope he enjoys his "new life" full of HOPE this year!!! ...Thank you to ALL of his AWESOME friends who came to support and celebrate Cole on his birthday...we REALLY appreciate was a GREAT day...and luckily good weather too! (oh, by the way Cecile, this post is for you since I know you love parties!
Happy Birthday Cole!!! We love you SO much and hope more AMAZING things happen for you this coming year. xoxo.