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12.10.2014

EPILEPSY AWARENESS.


What does Epilepsy mean to you? ...I'll tell you what it means to me....I've {SEEN & DOCUMENTED} Cole having 75,000 seizures & 3 different seizure types in 2.5 years...in those 2.5 years our insurance paid out around $400,000. This December would have marked Cole's "2 yrs of seizure freedom" which is when we could start weening his medication...in hopes that he would have less {RAGE} & help his life be more bearable for him & us. I thought those days were behind us. I'm a bit speechless & have yet to come to terms that 2 months ago...it slowly started creeping back into our lives. I honestly think I'd be a total wreak right now if it wasn't for our new baby girl! As weird as that might seem, that sweet girl has saved me in more ways then I could ever imagine. We are going back to the drawing board...we have basically tried {EVERYTHING} except one medication that will cost $900 {OUT-OF-POCKET} per month...we are waiting to hear back from the Neurologist. It's fitting that November is Epilepsy Awareness Month. 

I'm just going to end this post with a Quote: "I cannot promise an end to your adversity in this life. I cannot assure you that your trials will seem to you to be only for a moment. One of the characteristics of trials in life is that they seem to make clocks slow down and then appear almost to stop.There are reasons for that. Knowing those reasons may not give much comfort, but it can give you a feeling of patience. Those reasons come from this one fact: in Their perfect love for you, Heavenly Father and the Savior want you fitted to be with Them to live in families forever..." -Henry B. Eyring 

9.01.2014

3 YEAR ANNIVERSARY POST OP.

TODAY marks Cole's 3 yr anniversary of his {BRAIN SURGERY} in Cleveland. As I look back over the last 6 years I can not deny that he is a {MIRACLE} he is suppose to be here JUST THE WAY HE IS. I can't describe the years of horror & sadness that we went through, counting {150+ SEIZURES A DAY}. I was scared & unsure of his future. At times I felt so WORTHLESS  & ALONE. His drs HERE had basically given up on him, it became my OBSESSION to stop his seizure.  He couldn't look at us & he wasn't responding to his name. I would get small glimpses that he was "in there" but he was basically in an Epileptic State 24/7. Our happy baby had been taken from us overnight from what I can only describe as hell it's self!  I begged & pleaded "Why him! Please I will do ANYTHING." I spent HOURS a day doing research,  joining Epilepsy Forums & reading "case studies from Medical books". The word {DESPERATION} had a new meaning to me.  We were on our knees {PLEADING WITH THE LORD for MIRACLE} or a little piece of HOPE. SOMETHING. We took a leap of faith. 3 yrs ago today, I carried my sleeping baby in my arms, down to the OR where the surgery team lined the halls. I laid Cole's little body on the table, I gave him a kiss & walked away. It was the longest 8 HOURS of my life. I felt at PEACE, I felt CONFIDENT in his Surgeon & I was HOPEFUL. My relationship with the Savior was the strongest it had ever been. I have never witnessed so much KINDNESS from a lot of you, so much COMPASSION & so many MIRACLES along the way. I felt the Lords his arms around me when I was at my worst. I was confident we had found the best {BRAIN SURGEON} in the world to remove almost 1/2 OF HIS BRAIN. Cole made it through & this December will HOPEFULLY mark his 2 years of "S" freedom. If he makes it to Dec, we can start weaning his medication VERY SLOWLY! This is just as {IMPORTANT} as the day of his surgery. We have been holding our breath till now, PLEASE KEEP HIM IN YOUR PRAYERS. It has been a LONG ROAD that seems to never end, in this life it won't. Sometimes this stubborn little guy pushes my buttons & gets the best of me, but I can not deny the {MIRACLE} that this boy is. Cole he has brought the Savior into my life. Before Cole, I heard stories of Christ, I thought maybe he existed. But I did not "know" him. Because of Cole, I was able to KNOW the Savior.  We all find him in different ways & at different points in our lives. Sometimes because of people we meet. In my case, it was because of my Child. Thank you Cole. 

8.31.2014

KINDERGARTEN.

Cole started Kindergarten this week!  I love his teacher and this class will be a great fit for him.  It's a small Autism Kindergarten and the ratio is 2:1...which is great in the School District.  Next year will a little interesting since they group the 1-3rd grade & 4-6th grades together.  The ratio is much different, but we will cross the bridge when it gets here.  Cole only had 3 weeks off for summer, and he regressed a lot :(  He is no longer sitting in a chair as long as he used to or saying any words. Between teething and a full moon...those reak havoc on Epileptic Kiddos.  The last few weeks have not been great. But what do ya do!

Little Sister is catching up to him...we passed the 10 month mark with her a few weeks ago.  That was the age Cole started seizing, so it's been a little emotional.  Dad took the day off of work on Little Sisters 10 month mark.   He wanted to be with the family...so we went out & had some lunch and dessert...since dessert is what got us through those VERY ROUGH YEARS with Cole.

I took some back to school pics of Cole...he's pretty cute!






7.21.2014

PRESCHOOL GRADUATION.

Cole graduated from his last year of Preschool.  The Giant Steps program has been NOTHING BUT AMAZING!!!  We are so sad that Cole will most likely NEVER have services like this again...1:1 or 1:2 Ratio, ABA Therapy, an AMAZING Teacher & Aides who actually "understand"  Cole & are SO tolerant of every child.  EVERYONE says how much Cole has changed and how he has learned SO MUCH!!!

Cole walked with NO SHOES of course! 


This is one of Cole's Aides.  Cole & Ryan have a special bond...Ryan started voulenteering & he and Cole became attached to each other right away! Cole will do anything for Ryan...even Miss Tiff would tell Cole "if you can't have nice hands, you don't get to play with Ryan"...and it always worked!
 


I took a few pictures of him right before Graduation. He wasn't having it.


I made these cute little potted succulent plants for all of his Teachers & Aides.
 They turned out so cute.


6.09.2014

AWARE OF ANGELS.

I just realized that time fly's & I haven't done a post in a few months! I have some exciting news though! Cole was featured on "Aware of Angels"...it is a Non-Profit Organization Raising awareness of all children with chromosome disorders, raising funds for needed research, connecting families, and assisting those children who still need a diagnosis.  Not only that, but we get to do GENETIC TESTING!!!  We have done a few genetic tests on Cole...but Genetic Testing is CRAZY EXPENSIVE...and a lot of times is denied by insurance.  That is why we only did a few tests.  But, our WHOLE FAMILY (not just Cole) will get to do 2 different genetic tests...they will compare ALL of our genes...which can be kinda scary....some families prefer not to find out the results...but we are SO excited to have been chosen. We are the 1st batch of families being tested....as this is a "New Foundation".  Please check it out...and help us spread the word to help other families (either with funds or by having your child featured on the website).  They have some pretty cute shirts you can buy for $25 & the funds will help families like us. Awareofangels.org 

3.29.2014

LORD, I BELIEVE.

WARNING: This video will make you sob...if you have a child who suffers from seizures...this is THE MOST POWERFUL and COMFORTING video you will ever watch. ...this is our families story, just as it is other families story. We have felt EVERY SINGLE WORD in this video. And if you do not have a child who suffers from seizures...watch this video anyway...it is AMAZING!

(if you can, click the video so you can see the WHOLE screen...it's much better that way!)

Here is the link for mobile devices and tablets: 
https://www.lds.org/general-conference/2013/04/lord-i-believe?lang=eng

Cole went from having 150+ seizures a day to none after surgery. They weren't ever sure that the surgery would worked because he had generalized epilepsy & Infantile Spasms which are CATASTROPHIC & VERY VERY hard to stop...but we HAD FAITH.  We PRAYED MANY MANY times a day-many times an hour- & many times a minute, while watching Cole seize 100's of times a day. I was NEVER EVER mad at the Lord for that...but yes, I was sad, I was unsure of the future but I never gave up pleading with the Lord to STOP these seizures. I CAN NOT deny the POWER of PRAYER & the POWER of the Savior. HE IS OUR HEALER...and he led us to doctors to help us stop Cole's seizures. In my darkest and most hopeless hours, I can say...the Lord NEVER LEFT MY SIDE. I have felt him through the people or strangers around me...telling me they love me or that they are sorry. I have felt him through the quiet and calming moments of being by my self or by a prompting telling me to take Cole to the Cleveland Clinic 3 years ago...and that SAME prompting to tell me to call and schedule an apt the next morning...my thoughts were, "what, you want me to schedule an appointment in 2 weeks? ...but that hospital is on the other side of the country...and we have no money to get there!". The prompting came again, "You WILL get there".

 We got donation after donation from complete strangers, family & friends.  In less then 1 week we had enough money, which was amazing because the only tickets we could get for all 3 of us were $2,400 total. I KNOW WITH OUT A DOUBT the Lord was with us & held our hand EVERY. STEP. OF. THE. WAY. I realize that the healing has not come to other families & may not in this life. I do not know why. But, don't ever loose faith. Cole has been healed from his epilepsy (right now anyways, we do know it can strike at anytime, especially during puberty) but his mental handicaps have not been healed. For reasons, I do not know why...but I continue to have faith & TRUST IN THE LORD.  He continues to give me promptings on how to care for Cole & comforting me by sending a friend or family member over on hard days. People have shown up on my door step randomly or send me a message on FB.  My neighbor dropped 8 packs of pull ups off at my house for Cole the other day!!! They might seem like simple things, but to me, I know the Lord sent them.

This PROMISE below helps me to remember the "GRAND SCHEME" of things. This journey is not easy on Cole or us, but I know that Cole is SO SPECIAL & PERFECT.

3.09.2014

COLE SAYING APPLE!!!

This kid has been on FIRE this week!!! He started saying "Apple" and his assistant at school was working with him and Cole wouldn't stay in his chair, she said "Cole, we need to stay in our chair". Cole started saying "Stay", "Stay, "Stay" (and is still saying it!). According to my sister...he has also said "yes", "no", "dog" (for corn dog),and when my nephew said "Hi Cole". Cole said "Hi" back). Ummm, YA!!! We are SO proud of him!!! Here's a video of him saying "Apple"...and the great thing about recording him, is that Cole "looses" words...he will just stop saying them...but when we record him & have him watch his self saying things, he gets SO EXCITED and will start repeating what he says on video.

2.15.2014

ABA THERAPY UPDATE (VIDEO).

Cole has done AMAZING in the Giant Steps program. I posted a video so you can see for your self. In June 2013 (about 6 months ago) Cole would ONLY sit for about 5-10 seconds. His teacher, at the end of the year told me that she didn't "push him" because she didn't want him to freak out & get mad. I totally understand how she felt. But, it did not help Cole in any way. He started the Giant Steps program in July and I noticed 4 weeks later how much he had changed. He would sit in a chair until we said he could get up. We can actually sit through most of church now (if he's in a decent mood...it's a hit and miss)...of course he is super loud and sqeels and makes noises...but no one seems bothered by it, thank goodness! A year ago, we couldn't even walk into the church building without him going CRAZY...throwing his self on the ground, headbanging the floors/walls/us etc. screaming at the top of his lungs, ripping our hair out & scratching us. Needless to say, we would leave. I remember I was about 5 months pregnant and he was FLIPPING OUT!!! I was by my self & I had to hoyst him up over my shoulder & keep his legs from kicking my stomach/baby...it was not a pretty sight! But every week we kept trying. Soon, we found ourselfs inside the door, then we finally made it to the couch in the foyer & now, we can sit in the VERY BACK of the chapel. Cole also has 2 assistants at church who just LOVE him to pieces...they got through that HARD TRANSITION with him & have been able to let their hair down (instead of having it in a bun so he doesn't rip their hair out) & wearing jewelry. They have been able to take him to class where Cole can now sit through most of class! Anyways, here is a video of Cole...right when I say "Cole, get ready" he IMMEDIATELY puts his hands down, in his lap & looks at me in my eyes...ready to work! He EVEN did it without a "reinforcer".

And here is another...but Daddy was at school for the 1st time and we were trying to get Cole to point to him as his "reinforcer"!  He was too excited to work.

2.01.2014

AS SIMPLE AS A HUG & SMILE.

We were walking around the mall today & a special needs 14ish yr old boy saw a beautiful blonde 14ish yr old girl...he excitedly waved to her & said "hi". She waved back (just as excited as he was) & went up to give him a hug. The dad of the special needs boy asked the girl if she knew him, she said "no" & the dad said..."oh, only tonight you do!". I thought this was too sweet not to share. I'm SURE that beautiful girl made both the son & dad SO HAPPY tonight! ...there are some good people in this world....some who will never what an impact they have made in someone's life...even if it's something as simple as a hug & smile. I was so happy to have witnessed that, what a tender mercy and God Bless both of them!

"OWE".

Ahhh! I don't know why it's so hard to do a blog post now days. I wish it was as easy as Facebook! I'm going to do a bunch in a row...so get ready for a lot of updates!

When Cole "accidentally" gets hurt (& by accident, I mean he purposefully hits his head on something so he can get sympathy) he comes to tell me & says "owe" & points to it. Then I have to say "are you ok?" & kiss it better. I think we are on the 20th time in a row! 

1.11.2014

HOLES IN HIS JEANS.

Cole was a late walker & it took him till about 3.5 yrs to become "active" & climb on things...I was always jealous of the kids who had worn out knees & holes in their jeans. My wish came true...this kid blows through jeans...I kid you NOT, he went to school with a teeny tiny hole on the left side & came home with 2 huge holes. We're down to 1 pair with no holes! Who would have thought holes in the knees of pants is a blessing? ...this mom right here! (He's defiantly beating the odds of West Syndrome/Infantile Spasms...most of those kids can't sit up, walk, crawl etc.)

Even though I'm so grateful that Cole can put holes in his jeans...I did iron on patches to his jeans in hopes to salvage the jeans he has this week haha!