CONTACT ME:

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 PHOTOS ARE SUBJECT TO COPY RIGHT. DO NOT "PIN", SAVE, OR USE ANY PHOTOS WITH OUT PERMISSION, THANK YOU!

6.29.2011

1st DOSE OF NEW MEDICATION.

We finally got Cole's new medication (vigabatrin) in the mail today.  We just gave him his 1st dose.  He is running around & is SUPER hyper...but VERY happy!!!!  Pray he doesn't  loose any of his vision (it is a side effect from this drug).  If he stays on this medication...to get the 2nd month prescription we have to fly to Cleveland to have the ophthalmologist check his eyes and see the prescribing dr.  I thought it was every 3 months...yet another surprise!  Anyone have recommendations on frequent flyer points or anything like that?  Tyson, I am going to have to hire you as Cole's personal pilot!

6.28.2011

COVERS FOR CAUSE.

We are so blessed to have yet another special person...or actually people help Cole (see last post: Running For Cole).  Sew Tiny Baby, who has the cutest car seat covers ever, made a car seat cover EXCLUSIVELY FOR COLE!!!  They made a certain number of them and once they sell out the proceeds will go to Cole.  You can buy one here:  
Sew Tiny Baby, exclusively for Cole's Cause

This is from their blog post:
"Every time we produce a new product line for Sew Tiny Baby, we will select one child {cause} that will direcly benefit from the proceeds of a select cover. Not just any cover though...but a cover that we have personally designed with the child's very own parent/loved one. We will only have a set amount of the covers and once they sell out, they're out! The proceeds given to the family will be used specifically for the child's medical expenses. Have a child you would like us to select for the next cause?? Email us at sewtinybaby@gmail.com."



Thank you...Sew Tiny Baby!!!!

6.26.2011

Q&A

Before we left Cleveland we met with the neurologist again.  Since they found a small malformation on the right side (in addition to the larger side on the left) they were quite nervous to do surgery because they can ONLY do surgery on one side of the brain, not both.  The panel of doctors felt the best thing was to try the ACTH steroids or Vigabatrin.  We decided to try the Vigabatrin.  We haven't tried Cole on it yet (this medication is new to the U.S. & we can only get it directly from the manufacture, it should come this week).  In addition, we have to see the prescribing dr & the ophthalmologist who checked him right before (you have to have an ophthalmology apt before taking this medication & every 3 months while taking it because you can loose your peripheral vision...but he can loose it from the surgery as well).  Both of the drs are in Ohio...so either way, we will be going to Ohio again. 

Even though having them change their minds on how they would like to proceed was a small inconvenience...we feel like this is what needed to happen.  We have 100's of people praying for Cole & praying that the drs would be guided by the spirit & be inspired on how to treat Cole.  We know they are being inspired and we also know that the Lord's hand is guiding our family.   We may never know why they sent us home to try this drug or what might have happened, possibly that this medication can slow the generalized seizures (which are seizures coming from EVERYWHERE instead of one area) so that they might be able to pin-point what area of the brain most of the seizures are coming from so they can see what side of the brain they need to do surgery on.  They are PRETTY SURE it is the left side because of the size of the malformation...but with seizures you just never know...even though the right is very very small.  We thank you for your continual prayers & ask that you continue to keep the drs & Cole in your prayers.   

6.22.2011

EXPECT THE UNEXPECTED.

(IF YOU HAVEN'T READ THE LAST POST...READ THAT 1ST)
Well, I think that will be our motto this year, "expect the unexpected".  This year has thrown us A LOT of curve balls.  Yesterday we got our tickets to fly home (thank you for everyone who donated over the last few months!).  We got to the airport & guess what!  Our plane was delayed and the earliest flight we could get was Friday (2 days later.  We were looking forward to going home.  We are tired from 15 doctor appointments (in 4 days), having Cole sedated 3 times,  being a transient/bum  & sleeping in 3 different places,  taking planes, shuttles & taxi's everywhere (which I am a HUGE germ freak so it freaks me out!) and getting Cole on new medication (& I'll tell you what, I've NEVER had a 1 hour class on a perscription before.  Just for this *ONE* medication, we had to sign our life away, be taught how to administer it PERFECTLY, side effects, getting check ups, etc....It was crazy!!!) more on that later.  But we are excited because we got FREE Cleveland Zoo tickets.  One of the  church members out here was so nice!!!  She is going to take us to the Zoo & to the Kirtland Temple tomorrow!  That's one of the reasons I LOVE our church SO much...we can go ANYWHERE...including out of the country...and we know that member's of our church will help us out, it's also comforting knowing that if we need anything...they will be there to help...like the Bishop...who dropped us off at the airport...then, came back to pick us up because our flight was delayed.   I love that our church is the same every where, no matter where we go...and with people who have HUGE open arms & hearts!  Here are some pictures from earlier this week:
 That was one of Cole's nurses last time we were here & we got her again!  I love her, she is SO nice & always makes sure we are comfortable.
 This is the front of the hospital...the whole hospital is about 10 times bigger then that building.
 Cole giving mommy kisses.
 Cole giving daddy kisses.
 Happy Father's Day to the BEST daddy EVER!!!!!!!!  Seriously, Cole is so lucky to have him!
 Cole getting 1st class service...including being fed by hand.
 His first BBQ chicken wings....
 He LOVED them!
 Cole LOVED the big windows & liked to climb in them to look out the window...kinda a BIG DEAL for this little boy!
 His P.J's say "Mommy's Monster" :)
  Cuddling with mommy.

6.21.2011

PAUSE!?!

Ready for this? ...we weren't. They hit the "pause button" for Cole's surgery this morning. The panel of 50 doctors reviewed Cole's EEG & PETscan. They found a small malformation on the other side of his brain now.  They want Cole to try another drug which is pretty aggressive.  We will put him on it tomorrow...wait 3 weeks, if it doesn't work then then the surgery will be in "play" the end of July...yes we are going home & yes, we will come back to Cleveland for the surgery. They also figured out that he has "infantile spasms" aka West Syndrome" as well as the 2 other seizure types (absent & drop seizures). Don't let the name "infantile spasms" fool you...these are HORRIBLE, HORRIBLE seizures! Infantile spasms are considered uncommon & are one of the “catastrophic childhood epilepsy" because they are hard to stop/control/treat.  One article we found about Infantile Spasms was called "Little Seizure, Big Consequences"...which sums it up pretty good.   While we are very frustrated that we flew across the county, we feel like the drs are trying their very best.  Part of the panel of drs thought Cole should have surgery now and the other thought he needed to try another aggressive drug.  The surgeon had a meeting with us and let us know if it was "his child" what he would do.  We feel comfortable with their decision & know they have Cole in their best interest. 

Thanks for all of your Love & Support...we really appreciate it!   Keep praying for our little boy :)

6.20.2011

HEART MURMUR??

Yup...you read it right...while the genetisis was checking Cole out, she noticed it sounded like he had a heart murmur & immediately set an apt up for an EKG tomorrow. She said for a normal person to have this isn't a big deal, but for Cole it could be another piece to the puzzle and they need to know before they do his surgery. His genetic tests have come back normal so far, so she wants to see if he does because it could lead us down a different road for testing. Yes, what he has is STILL genetic even though the tests they ran were negative, but because they are A LOT of genes it is very hard to find WHICH ONE...but I know she is doing her VERY best to find out!). She wants to run a genetic test to see the probability of this happening if we have a boy again or if this could also happen if we have a girl. Either way, we will eventually have more kids...because we would love that child regardless of it's health condition just as we do Cole. At least we have A LOT of experience in that area now! We are praying that Coles heart is healthy & there is nothing wrong with it :)

6.19.2011

COLE LEARNS TO GIVE KISSES!

Cole learned to give kisses yesterday!  He actually has done it randomly before...but we didn't know what he was doing.  Instead of a normal kiss, he sticks his little chin out and presses it against our face.  When we figured out what he was doing...we would ask for a kiss...except Cole would give us a kiss every time we said the word kiss.  He did this all night last night...but must have forgotten how to do it today  :(  Things come & go for him, so hopefully after surgery things will JUST come!
He is so cute!!!  I love this little guy :)
Here is a video of him...I would make it bigger so you can see him stick his chin out...it's so cute!

6.17.2011

EEG & PETscan.

Well, we've been her for a day...& we all want to go home! It's hard going through something & being away from home. Last night was not so fun for us...I was allergic to something in our room and couldn't stop coughing & my eyes & throat were super itchy...I was up till 2:30am and I kept Cole up till 1:30am (not good when he should be getting his sleep).   Cole got his EEG leads on today for his overnight EEG & PETscan.  I was with Cole for a little bit in the Radio Active area for his PETscan...but they sent me out of that department because of the 1% chance that I could be (but am not) pregnant.  Daddy stayed with him the rest of the time.
 Cole woke up early from the anesthesia...he was GRUMPY!!!  He was kicking, screaming, pulling etc.  The anesthesiologist had to come in and give him something to put him back to sleep...it was wonderful!    
"Dorothy & the Wicked Witch" came in to visit Cole & brought him the coolest pop-up book, toys & balloon!  He didn't care, but I was excited!  
Thanks for all of the wonderful comments, texts & emails...we really appreciate you thinking of us & praying for Cole.

6.16.2011

WE MADE IT.

we finally got to Cleveland! The 1st flight to Chicago was awful...Cole cried the entire time...probably because we woke him up @ 4:30am. The 2nd flight was perfect...had great seats, Cole slept most of the time & didn't fuss once...it was only 45 min though. While we were waiting for our flight in Chicago, a gentleman came up to me & asked why Cole was wearing a helmet, I told him...& also told him Cole was having brain surgery. He said he was a PA to a neuro surgeon & reassured me that the Cleveland Clinic was the best! After the flight he came up to me and wished us luck and asked what Coles name was....I told him & he said he would be praying for him!
Tomorrow Cole has a BUSY schedule (June 17):
*needs to fast until PETscan is done @2pm*
8am: admin interview
8:30: pediatric monitoring unit
9:30am: PETscan lead placement
12:00pm: PETscan injection
1:00pm: sedation & PETscan

6.12.2011

SURREAL.

Well, we leave this week...and it's surreal.  I have been trying not to think about it...I haven't even packed or thought about packing.  I am working my 2 last shifts for 12 weeks...I am taking Wednesday off to get ready & we fly out at 7am Thursday.  Right now, we are trying REALLY HARD to keep Cole from getting sick.  The nurse called the other day to tell us if he gets sick he CAN NOT GET SURGERY!  So, if you are sick...stay away! :) We aren't taking him to church, bringing him around kids & washing hands like crazy.  Now, if we can just get from here to Cleveland in the airport, airplanes & taxi's with out getting sick...as well as when we are in Cleveland from the 16th-22nd in hotels & hospital with out getting sick...then we will be good!  
*PLEASE PRAY FOR COLE TO NOT GET SICK!!!*

I love this little boy SO much!!!  When I first found out we were having a boy, I dreamed of taking him to football practice, watching his baseball games, wondering which college he would attend & where he would go on his mission.  I have different dreams now,  I want him to be alive & healthy & to hold him and listen to his laugh forever.  He has taught me what is REALLY important  & how your life can change so much in an instant that all the things that once matter...don't matter anymore.   I am ashamed at my self for the dreams I once had and the goals in my life I wanted (they weren't bad) but I feel like I took for granted the life we once had.  Cole, you are perfect to me in every way...I love everything about you. I love your smile, the perfect little giggle that literally lights my world up, the way you smell & the way you "pet" Gracie with your arm.  I have confidence in our Heavenly Father that you will be well taken care of and in good hands of the surgeon and drs. You have been such a blessing to us.  You are so strong...and I know you can
get through this with the help of your Heavenly Father as well as all  of the people praying for you.  
You are such a sweet little guy...thanks for all the hugs you give me & daddy!

THINKING THE WORST, HOPING FOR THE BEST.

...this is what we are TRYING not to do...thinking the worst.  But, we do know that ANYTHING can happen...so we have been trying to spend as much time together & making some fun family memories.   We had some friends over (who we just love!) & had a campfire, smores & stories.  Cole was so cute...HE STUCK HIS FEET OUT THE WHOLE TIME TO WARM THEM BY THE FIRE.
Cole & his buddy Blake.
Cole fell asleep by the fire...he was SO good & didn't make a peep.
We took Cole to Lagoon because he LOVES rides. He was pretty amused & was jumping up and down laughing!
Daddy got the red shirt for him...it says:
CAUTION: UNDER CONSTRUCTION,
PLEASE EXCUSE MY MESS
(on the back): ADULT SUPERVISION REQUIRED.
It was perfect for his surgery...even though he can't wear it...
it wouldn't be fun trying to get it over his head after surgery.
Cole loves to suck his thumb & rub his arm at the same time...so CUTE!
Cole LOVES his daddy!!!
Since Cole is off the diet, we can finally give him apple juice...he loves them & we think it is SO cute watching him drink them!
Cole needed to do a little work on his lap top :)
Cole has  A LOT of seizures when he gets hot...so...the clothes came off!!!
He ran around the whole time with daddy chasing him.
This was his FAVORITE ride...the swings.
 
Cole, I hope you had a lot of fun! We love you buddy.

6.04.2011

THS

We had a special surprise yesterday...employees from THS donated $1000 to Cole!   We wanted to Thank each of you individually, but we aren't sure who all donated...so THANK YOU!  We are so amazed by the love and support that we have gotten from each of you.  I think Grandma was pretty surprised too!  We love you guys are pray you will be blessed for your generosity.
xoxo,
Cole's Family.
thank you THS!!!

6.02.2011

DEALS THAT MATTER (for Cole)

We signed Cole up for Deals that Matter.  Local companies give a REALLY GOOD daily deal and 15%-50% of the proceeds goes to Cole.  There will be a 30 day period where Cole will get 100%  of the proceeds...if you sign up, you will be notified when that happens.  To sign up go here: http://dtmr.co/dnzb?  (click on "Promote this cause" underneath Cole's Picture on the left hand side).

Today's deal is Cupcake Chic...buy $4 and get $8 worth of cupcakes (these cupcakes are YUMMY!!! they are right by Costco & the Movies)....You can actually choose from a few deals going on...right below the box w/his picture in is "THIS MATTERS TOO", those are the current deals you can buy :)

Other deals that we have seen are Laser Hair Removal Package for $99 (value $1000), Rocky Mountain Race Way, Seven Peaks, Profession House Cleaning $30 for 6 hours!, the bread bowl 50% off, Tandem Paragliding at point of the mountain $59 (value $125), The Ranch Steak Company $125 (value $295), Air Duct Cleaning $59 (value $200), Bowling Summer Group Pass $59 (value $500)...every few days they change the deal!!!!

Buy some great stuff and help us raise money for Cole!  oh, and to clarify...the "dtm causes total" is NOT Cole's total, it is the total that they have raised for everyone :)  Cole's Cause Total will show while you are signed in after clicking "PROMOTE THIS CAUSE".
(FEEL FREE TO FORWARD THIS ON TO YOUR FRIENDS AND FAMILY!!!)