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8.31.2011

"CHEERIOS"

We had a great night tonight, another family from the Cleveland ward had us over for dinner...it was nice to get out and not stew about the day tomorrow! They were so much fun and had a cute little boy.
 Every Wednesday the hospital has a farmers market in front. An Amish family makes baked goods and sells them there. We got a cinnamon roll (BEST cinnamon roll I've ever had...better then Cinnabon!) a pie & cookies!
 
Cole had his MRI today. It was SO fast! Usually it is longer then an hour, today it was about 40 min. They put "cheerio's" on his head for the surgery tomorrow. We check in at 5:30am to the hospital...meet with the surgical team...they will shave his head, draw on it while we are there to confirm the Lobes being removed as well as the right side being taken out (which is the Left!). They will start surgery about 7:30am and get done (if all goes well) about 2:30pm. Please pray for Dr. William Bingaman as well as Cole. 

8.30.2011

MEETING WITH THE SURGEON.

Cole had blood work done to make sure of his blood type etc. for the blood transfusion he will need during surgery. Little kids loose quite a bit of blood. Did you know Cleveland Clinic has NEVER had a fatality from pediatric brain surgery! (WE WANT TO KEEP IT THAT WAY!) He said most hospitals that perform these surgeries, have on average 1 in 100 deaths. Dr. Bingaman has done the MOST pediatric brain surgeries in the U.S. We trust him and feel very comfortable with our decision. While we we waiting we ran into Cole's neurologist (Dr. Luchhwani) & can I tell you how much I LOVE him! He took a double take as he was walking down the hall (we weren't scheduled to see him this trip. He rushed right over and was GENUINELY happy to see us. He was glad we got here safely and even apologized a few times that we had to put Cole's surgery on hold and come back again...but he did remind us that "you can measure 3+ plus times & only cut once", which we agree! I've NEVER had a doctor SO genuine. Well actually Cole's pediatrician is pretty amazing as well, but it's hard to find those amazing drs. I am pretty sure if we saw the 3 neurologist that we had back home in the hall, they would walk right past us and not even realize it. But the dr that is 30+ hours away recognized us immediately! He even said he would come check on Cole right after surgery and while he is in-patient and that he would be sending good thoughts and prayers our way. I love it here!

Also, in the waiting room...we met a family with a little boy named Noah who had brain surgery 15 months ago. He is 1 year older then Cole & also has a malformed Left Temporal & Occipital Lobe as well as the same seizure type. He had surgery the SAME EXACT age as Cole will be, how ever they only took out the Left Temporal to try and preserve his occipital. Dr. Bingaman did his surgery as well & it went PERFECT. He was seizure free for 9 months and started seizing again. They are back and Noah will have surgery tomorrow to get his occipital lobe removed. I asked Noah's mom how he was before surgery. She said he was just like Cole..."they were like twins!". The only difference was that Noah had about 25 words before surgery, Cole has none. Right after Noah's surgery he was saying new words. He even knows the alphabet and what each letter sounds like, however something like stringing beads together that other kids his age are doing, he can't do. We both were SO relieved to see this little boy and what Cole could potential be doing in the future. Noah gave us even MORE hope! He is a handsome little boy and reminds me of Cole...nice olive skin and brown hair. He was coloring on a paper, making circles and I kept hearing him say "circle, circle, circle"...it was the most uplifting thing hearing him and watching him! I am sure we will be getting to know each other more since all of us will be living at the PICU for the week! Please pray for Noah, his surgery is in the morning.

WE "HEART" RONALD MCDONALD.


We have been fortunate enough to get into the Ronald McDonald House again!  This place has been our "home away from home".  It is AWESOME!  There are about 30 rooms. We don't ever know if we will get a room until the day before arrival...if there are no vacant rooms, they put you on a waiting list.  A few nights a week, local families, church groups & restaurants come to the "House" and serve dinner.  There is a group of ladies called the "Lovely Lunch Ladies" who come every Wednesday and make an OVER THE TOP lunch!!!  They are amazing cooks...they will never know how many families love and appreciate them and their service.  An extremely  small percentage is actually donated by McDonald's ...EVERYTHING else is donated by the local community: toilet paper, paper towels, toothbrushes, hygiene supplies, paper plates, eating utensils,  cribs, strollers, car seats, highchairs, T.V. (which there are only 3 of them in common areas...none in the bedrooms) couches, carpets, bedding & towels (which are donated by hotels...the ones that are old and they don't need anymore).  This place wouldn't exist if it wasn't for donations.  If you are looking for a way to serve or donate un-wanted items...I REALLY suggest giving to Ronald McDonald!  Most big children's hospitals have one around them...I know there is one close to us.  We LOVE you RMDH!!!

The back yard is HUGE...this play area was donated by a family.  I *think* by a family who's little boy passed away.  It is call "Aaron's House".  There are a few other play area's that were donated by families who lost a child as well...isn't that amazing that they would do that!!!!




Cole had his fist smootie. He didn't like it until we let it sit to warm up (he hates cold things). He love it and kept taking it away from daddy.

8.29.2011

WE'RE HERE...AGAIN!

We got into Cleveland earlier today...it was a VERY long flight (longer then usual) but Cole was a Rock Star...and didn't fuss once!  It was seriously amazing...the people around us kept saying how amazing Cole did.   A family here in the Cleveland Ward came to pick us up and then made us an AMAZING dinner, they even have the same last name as us (nope, no relation) but we are SO glad we were able to meet them cuz they are awesome and have the cutest little girls.  I love that every where we go, there are members of our church willing to help us out (even if it's on the other side of the country)...we are so lucky and so blessed to be apart of an amazing church (literally ANYWHERE we go)!!!  This ward in particular (of course along with our home ward) have taken very good care of us! We have had such a great time so far,  it really couldn't have been better.  Thanks for all of your prayers, we KNOW & FEEL them being answered!!!  ...so keep praying for us ;)

8.21.2011

PRAY FOR COLE.

We have *ONE* week till we fly to  Cleveland & *ONE & A HALF* weeks till Cole's surgery.  We have mixed feelings of anticipation & excitement as well as nervousness & freaking out!  It has been exactly 2 years this month that our world was flipped up-side down...and if someone told me right before everything happened...I would have laughed at the thought that my healthy 9 month old would need an extensive surgery and the journey that would lead us to him needing surgery.  I have full confidence in our decision because I know the Lord has lead us to this decision, the hospital and the doctors. 
We ask that you keep Cole in your thoughts and prayers, that his surgery will go well and his little body will be able to withstand the trauma, as well becoming seizure free forever so he can progress.  We would ask that you also keep his brain surgeon (Dr. William Bingaman) in your prayers, that he might be inspired during the surgery to know and feel what needs to be taken out...or left untouched.  If you are here and reading this....THANK  YOU for reading our blog.  It's been incredible to feel the love and support from people LITERALLY all over the world!

One more thing...we met a beautiful little girl named Kaizley who is 1.   Her mom had found our blog back in February, when we had finally found out what was wrong with Cole.  She was inspired to take her little girl to the Cleveland Clinic after seeing the success that we had been blessed with.  Kaizley and her parents will be at the Cleveland Clinic the same time we will.  I want to ask each of you to pray that they might find some answers that will help their beautiful little girl. 

8.14.2011

SUMMER'S END.

 Well, it's time for summer to come to an end...almost!  I'm a little behind on posts...these are from July & August:
 Mommy cut Cole's hair.  I did a pretty good job this time!  After a few very bad hair cuts...it finally paid off!  I wasn't about to pay someone $15 to cut my childs hair...so I am glad I finally mastered it.
Tried to get him into his kiddie-pool...wasn't going to happen!  He hates cold water.
Daddy came home from work...and as usual Cole gave him his greeting with lots of smiles, jumping & hugs....it's pretty much the highlight of our day!!!!!
Cousins feeding Cole, getting drinks & blankets for him!
Even Aubrey who is younger then Cole takes care of him ALL the time...it's the cutest thing!  When Cole falls down, she goes over and helps him up...even though she's half his size...so CUTE!
Brain Wave Fundraiser...with the Harley Monster
Mater...from Cars!!!!...He couldn't care less...but I was excited
TEAM COLE 5K run!
Love this family!  They have come to every fundraiser for Cole :)
Made a pit-stop @the SLC Temple...mommy & daddy were married here, isn't it BEAUTIFUL!!! 
Cole likes to close his eye's and run around...yup...he's dangerous! ...but SO CUTE!!!
I love this little guy...even when I am with him I miss him!

8.04.2011

FINALLY!!!

We finally have Cole's brain surgery scheduled for September 1st.   He "failed" the Vigabatrin, however it has helped him so much cognitively.   We are ready for this!  The Lord has blessed us with this beautiful little boy and he has also blessed us with revelation to know how to help Cole.  I know that we did not get down this road by chance.   It was by the hand of the Lord, guiding us to where we have finally gotten.  I know it wasn't by chance that I met Cristina, Ashley, Niki & the other wonderful mothers I've met along the way or we would not know what was wrong with Cole.  The Lord said, “I will tell you in your mind and in your heart, by the Holy Ghost, which shall come upon you and which shall dwell in your heart” (D&C 8:2).  I have felt this and there is NO mistake the feeling I get when the Lord is prompting me how to help Cole.

This journey has not been easy on the 3 of us, however we have felt the  Lord lighten our burden.  Especially the burden of our financial travels of getting out to Cleveland because of the many wonderful people who have donated to Cole's medical fund.  Mosiah 24:14 says:
"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 know the Lord has been with us every step of the way...even in times where we have felt so alone and frustrated...I know he has never left us.  We want YOU to know how much we love and appreciate you...there have been so many people who have donated their time, their hard earned money, talents and resources to help us and we can't thank you enough!!!!