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2.27.2011

OUR WEEK AT THE CLEVELAND CLINIC

I love this picture,it's perfect! Painting by Greg Olsen
First off, we want to Thank everyone who made this trip possible for Cole. At the end of January it felt like a wall was built infrount of us. We didn't know what to do or where to turn...the drs here weren't willing to help us...didn't want to do an overnight EEG or take a second look at his MRI as we had asked. It was hard because in our hearts we knew something else was going on.

When we found out about the Cleveland Clinic (thanks "C"), I knew I had to get Cole there. I knew they could help him or at least give us more answers and if they couldn't I would have been satisfied knowing that Cole saw the best drs. I told "A" that I was "going to get Cole their and I didn't care what it took". He laughed because he knows when I put my mind to something, NOTHING will stand in my way...and said "ok". We prayed about it and felt like this was what we needed to do. We got everything worked out and ready to go in 1 week!

We had an amazing and overwhelming amount of support and we thank each of you for your prayers and donations. I'm am shocked at the generosity of friends, family and stangers...who I pray will be blessed for what they have done for us. We've had 1,600 people look at our blog this week...from the US, Belgium, Canada, Singapore, Mexico, Belize, Germany, Vietnam, Columbia, United Kingdom, Czech Republic and Netherlands...what a blessing it was for us to see the Love and Support! We truly felt each prayer from everyone. We felt the Lord leading us and watching out for us every step of the way.

There was a few things that were significant to us that I wanted to post...Cole's favorite toy stopped working and needed new batteries. I sent "A" to the gift shop to get some. It was closed..."A" saw a maintainence worker and asked him where he could find batteries. The guy appologized and said everything was closed. "A" thanked him and started walking away. The guy called out to "A" and asked him what kind of batteries he needed, he pulled to BRAND NEW double A batteries from his pocket. It was like an angel placed them there!

The second was in the morning. "A" asked me what I wanted for breakfast, I told him a big croissant and 5 peices of pinapple would be nice. He came back and said "you'll never believe it, but that was the LAST croissant & there was ONLY 5 peices of pinapple left!" These are small things, but they are significant to us...we truly felt that we were being blessed in everyway. The Lord held our hand and he answered your prayers and we thank you!

And of course, last but not least, we did get an answer as to why Cole has seizures! It wasn't something a parent wants to hear. It was good to get an answer, but to hear that practically half of his brain is malformed breaks my heart and makes me ill thinking about it. I look at him and wonder how this could have happend, how this perfect little boy could have a malformed brain. I don't think it's something we will be able to fully understand and comprehend in this life. We don't know what is going to happen...but all we know is that the Lord isn't going to leave us now. He has sent wonderful people to support us during this trail.
PLEASE FEEL FREE TO LEAVE A COMMENT, WE LOVE THEM! Just click on the "comments" link below.

2.26.2011

We made it to Minnesota! The weather is horrible here & the plane is too heavy so they are kicking people off! We made it by 2 minutes before they closed the gates! It's been a whirlwind this week! Cole wants to get home & see his puppy. Hopefully we can get out of Minnesota!

2.25.2011

Cole got realeased from the hospital today, we will fly home tomorrow (pray for good weather...it's very snowy from Ohio to home & I dont want to get stuck somewhere w/Cole!). We will wait for the panel of drs to discuss if Cole will be a candidate for surgery & results from genetic tests. They added meds. Since we got realeased...reality is starting to set in for us...it's scary! We are not sure what the future holds for little Cole but will continue to let the Lord lead us through this trial. We thank each of you for your continual love & support....keep praying for us, we feel each & every prayer & we need them!

Cole just got done w/the MEGscan. This scan is fairly new & not many hospitals have it. It works with the MRI together to pin point exaclty where a seizure is coming from! We actually got to do a photo shoot for it! So our family will be in the brochure....Cole's a superstar!! They will send them to us in a few months.

2.24.2011

Cole came out of sedation so much better this time! He will get his MEEG done tomorrow as well as genetic tests...the "Malformed" part of his brain is actually pretty big. We will get the results of the PETscan tomorrow. I am in LOVE w/all of his drs! They have been AWESOME!

Cole is getting ready for his PETscan. They will do a MEEGscan tomorrow. Then take the MRI, PETscan, MEEG & 3/day EEG...the 3 drs will meet w/a panel of 60 (yes 60!) other drs...to see if surgery is an option. but right now they will add Topamax to his keppra & also up the Keppra. It's NOT likely that meds will work...so hopefully he can have surgery on the malformed part of his brain. Please keep praying for him &drs.

2.23.2011

We just talked to the attending & his MRI is abnormal (NOT like the other hospital stated!)...his left side didn't form all the way when he was developing. ..this has been my gut feeling, but the other drs wouldnt listen! He will have a PETscan tomorrow , she said we have options (drugs & surgery)...so we will be back here soon! I still can't believe we are here! It's felt like we've known about coming here forever...but it's only been 2weeks! Please keep praying for Cole & drs.

2.22.2011

We did it! It took 2hrs to get the EEG leads on (at the "other hospital" it takes 5 min because they "slap" them on & don't measure them)...he fought to the end, even though he was swaddled w/duck tape & both of us holding him down! His eye's are so swollen from crying...seriously they look like when he's a newborn!

Coming off the anastecia was not so good. He cried for hrs! We met w/ dr.L & he was AWESOME! It was weird having a dr so patient & wasn't bothered by the extra time he had to spend w/us. He was GENUINE! He showed us his MRI (we got it back a few hrs later! usually it takes months!) ...He was concerned about the Right side of his brain...& ordered a PETscan (more anastecia) prob on Thur! He said they would try to get things done before we leave...but be prepared to stay longer.

getting ready for his MRI...he's starving! Poor guy.

After 4 yucky diapers in 1hr Cole finally went to bed. At 3am he got stuck in the hotel crib & woulnt go back to sleep! He ended up in our bed kicking & thrashing & slapping us all night! (this is the 2nd time he's ever slept in our bed) . Cole you ALWAYS keep things interestinng!

2.21.2011

We made it to Detroit! Except we had to run accross the whole airport...& I didn't realize how out of shape I am! I seriously almost passed out! Here is a pic of Cole's 1st plane ride! (pray for good weather for us...there's a big storm in Ohio)

2.20.2011

BLOG UP DATE'S WHILE IN CLEVELAND!

We leave for Cleveland tomorrow!!! We will try to update the blog as much as possible...we don't have a laptop...so we will be taking pictures from our phone and uploading them on here...so I appologize for the pictures looking weird! Feel free to post us comments on here as well. We love you guys and thank you SO much for helping our family! Don't forget to pray for little Cole.

So far we know he will get an MRI first thing Tuesday, then go into recovery and then get admitted to the Epileptic Unit for his 3-day EEG. The drs will come talk to us after the results of the MRI and go from there to do the other tests. They will also do genetic testing...which we are REALLY excited about!

LOVE. SERVICE. COMPASSION.

Yesterday we went to a funeral service for our friends little baby. He was diagnosed with Trisomy 18...it is a genetic disorder when a person has a third copy of genetic material from chromosome 18, instead of the usual two copies. Here's a video of a sweet little family who experienced this as well http://www.youtube.com/watch?v=th6Njr-qkq0

My heart breaks for them, they have been incredible examples to me and my family. I just love them so much and I am sad that they had to go through that, in that same breath...things like this bring people together and it helps to unite people. I've seen it first hand this past week from friends, family & strangers who I've never met and were SO willing to help our family. It's been an amazing experience and has helped to make this trial & fight of ours bitter-sweet.

"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. All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God . . . and it is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire and which will make us more like our Father and Mother in heaven."
— Orson F. Whitney (Faith Proceeds the Miracle)
Ether 12:27

I know we haven't been able to thank each of you personaly. But,we are SO greatful to EACH & EVERYONE of you who helped make this possible for Cole to get to Cleveland. We are so blessed to have amazing people in our lives & the strangers that were so willing to help! I pray that everyone of you will be blessed for your compassion & willingness to serve our family. I know we have a LONG road ahead of us...if they find something or if they don't. I am willing to do what ever it takes to help this precious child we have been blessed with...and I hope that I can do it with a smile on my face even when it is tough!
We ask for your prayers to be with Cole & the Drs...also, that Cole will be strong and endure all the tests that will be ran on his little body...and that all will go well. Thanks so much!

2.17.2011

COLE'S PHYSICAL.

Cole had his physical today to make sure he is healthy to get sedated on Tuesday. I haven't taken him to the "normal doctor" since he started having his seizures...because our life is already full of trips to the hospital. He's lost a little weight from coming off the diet and is growning so tall.
-80th % in Height (36.7 inches)
-50th % in Weight (29 pounds)
-his head is a little small (but still growing)
I love my his dr. I reminded her that she was the one who helped us get into the Neuro when he 1st started having seizures (cuz she works at that hospital once a wk)...if she hadn't helped us...it would have taken 3 months to get in!!! She said "that was unexceptable!". I AGREE 150%!
Look what my V.T./neighbor brought us for dinner!! It was so GOOD...Thanks "D" it was SO Yummy!!!

SHOUT OUT TO QUIKSILVER!

A HUGE Thank You to Quiksilver (www.quiksilver.com) for all the LOVE they have given me! I wish I could give each of you a great BIG HUG!
Love, Cole

NO MORE BOTTLES.

I completly forgot to post that after Cole went off of the Ketogenic Diet, he also stopped drinking bottles! (sorry...this is blog is also my journal & I will be printing it off @the end of the year). I don't have to wash 20 bottles a day any more! And can I tell you how great it is that I can feed him on the go now! It's great, maybe this summer I'll actually get out of the house. Thankgoodness he's off of the diet, it makes it that much easier to travel to Ohio!

Cole is so funny, he tried to sit on the edge of the box & fell in...he actually thought it was funny, and then quikly started sucking his thumb, then kicking his feet like a 3 month old baby because he was so happy!

2.10.2011

HELP COLE GET TO THE CLEVELAND CLINIC IN OHIO!

Dear Frineds, Family & Blog Stockers:
If you would like to help our little Cole get to Cleveland...please use the "Donate Button" on the right side of the screen. We appreciate all the love & support, may the Lord bless you as he has us! Our goal is $4000...see the side bar for updates on fundraising!

THESE ARE THE DRS ON COLE'S TEAM:
Sumit Parikh, M.D.
-This will be Cole's neurologist. He specializes in diagnosis and treatment of patients with mitochondrial cytopathies, inborn errors of metabolism, cognitive and developmental regression, autism and developmental delays. (what a perfect match for Cole!)

One of our special friends just got back from seeing this dr. last month and this is what his mommy said...(hope you don't mind "C").
"Bertrand's first appointment of the day yesterday was with Dr. Sumit Parikh, and I'll be upfront by saying I came out of that appointment with a crush on him. ;) Heck, I think Matthew, Diane (Bertrand's nana) and even Bertrand himself came out of that appointment with a crush! It is unbelieveably rare to find such a combination of expertise, attentiveness and compassion."

Dr. Deepak Lachhwani
-He specializes in children with complex epilepsies, children with epilepsy and Sturge Weber Syndrome, children with first seizure, clinical drug trials, clinical neurophysiology, diagnostic video EEG for pediatric seizure disorders, EEG, Epilepsy, epilepsy and epilepsy surgery in children and adolescents, Epilepsy surgery and medical treatment of epilepsy in children, interpretation of continuous EEG monitoring in the critical care setting, invasive EEG monitoring for pre-surgical evaluations, Pediatric Epilepsy, pediatric epilepsy and epilepsy surgery, Rasmussen's encephalitis and medically refractory status epilepticus., Seizure disorder treatment and surgery in brain malformations, seizure manifestations, Sturge Weber syndrome, surgical treatment of refractory epilepsy and functional imaging, Tuberous Sclerosis Complex, vagus nerve stimulation, Video EEG, clinical outcomes after epilepsy surgery in children with tuberous sclerosis.
I can't be HAPPIER then to have these well rounded Dr's to be working with Cole!!! It's going to be a GREAT year! (hopefully they can help us get rid of that helmet and the padding on the walls!)

CLEVELAND CLINIC HERE WE COME!!!

We got approval to go to the Cleveland Clinc in Ohio!!! We will be going the 20th thru the 26th. It's funny how we can get into a hospital with the BEST drs. in 1 weeks as opposed to the one in our "backyard" with a waiting list that is ALWAYS 3 months. If you don't know about Cleveland Clinic...it is often refered to as the "Disneyland" of hospitals. They very thurogh drs...and actually read the EEG's!

We are so excited...we know we might come back with out any answers, but we also know that we have to keep fighting for him. We will not stop!!! Cole deserves to have drs who care about him and even though he is "complicated" and "hard to treat" as other drs have stated...I know these drs are willing to take it head on and exhast their knowlege and resources to give us more answers and to treat him the best way possible.

I hope and pray that they will be able to put ALL of the pieces of the puzzle together to find out if there is something else wrong with him (other then epilepsy) and that they will be able to find out more about his seizures to treat him accordingly.

We ask for your prayers to be with Cole and the Drs. We know Prayer works and that Heavenly Father listens to and answers each & everyone's prayers (though they may not be at the time we are "wanting"). We couldn't deal with the greif, finding treatment, stress and heartache with out the grace of our Lord and Savior. This journey isn't what I quite expected for my child...but I know that our trials are for our good (sometimes it hard to see it), but I know that we will be blessed for EVERY tear we have shed, every dream that was shattered, and every loss we have felt. Only the Lord knows the sacrifice that we have made for Cole and I know he knows exactly how we feel. I pray for everyone who is fighting for their child that they too will find comfort and peace knowing that the Lord is on your side and that you might find the answers needed in helping your child/children!

This is my favorite scriptures...it means more to me NOW, then it could have had I not been through this experience.

D&C 121:7-8
My son, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment;
And then, if thou endure it well, God shall exalt thee on high; thou shalt triumph over all thy foes.

2.07.2011

FIGHTING FOR COLE.

So, this is more of a ventind post! The children's hospital (which I will not name-but easy to figure out) is not being so helpful. Cole has been getting up in the middle of the for 6 months...having cluster seizures, shaky, eye's glossed over. I asked the dr if we could do an over night EEG...because I couldn't do it anymore. Having to get up in the middle of the night for practially 2 years stright is not what I had in mind.

You would NOT believe it...but she told me they didn't want to do one. I've heard other mom's say they had to fight to get an overnight EEG or 3/day. And when they meant fight...I didn't know they meant F-I-G-H-T!

She asked me why I wanted it...and I told her as I was bawling...that in the 1 1/2 years that Cole has had seizures, he's only had an MRI & two 20 min EEG (the resent one he wasn't even a sleep). She told me no again, and I told her I have to fight for my son and I wasn't going to sit back anymore and not doing anything. She kept saying "but we have a plan with the medication"...and I was like "what does the medication have anything to do with an EEG". She kept resisting and I asked her if there was a reason she didn't want to do it...she said she could do it...but didnt want to and wouldn't give me a reason. I told her that "I have good insurance and if the insurance covers it why we couldn't do it!?", and her answer was "because it may not show anything". I told her I was aware of that...but logically, if my insurance will pay for it and he's only had 20 mins EEG's then it would be logical to one. And I know it may not show anything (probably because they don't even know how to read an EEG- TRUE!)...but if it did, then would would go from there!

I couldn't believe that I had to have this conversation with a dr while my child has had seizures for 1 1/2 years and few tests!

But don't worry...we are trying to get into the Cleveland Clinic in Ohio soon!!! with the best drs (THAT ACTUALLY WANT TO HELP!) and as "C" called it...the "Disneyland" of hospitals w/ Day Spas & fine dinning etc!

oh, and the nerve of the dr to ask me if I could even get off of work for 3 days for it!!! WHAT KIND OF MOTHER DOES SHE THINK I AM??? DOES SHE NOT GET THAT I PUT MY CHILD FIRST???

OFF THE DIET...AGAIN...& FOREVER?

January 28th we took Cole off the diet. Actually, he took his self off of it. He was protesting anything and everything...we were sick of fighting him...although he did SO well for 1 whole year (to the date)! Yes, it was worth the hellish diet for that long. It decressed his seizures 75% (which was to be expected)...I feel like it changed his seizures for the better.

Since being off the diet: his seizures are the same quantity...but "bigger" drops :(

He couldn't do it anymore...and either could we. We are still watching what we feed him- No high carbs or sugar. But that is EASY! I'm glad I don't have to weigh anything out or figure out how to put something he likes into a recipe. It has been nice feeding him as much strawberry's as he wants instead of 2 measly little peices & adding coconut oil to it. I want to smash the scale to peices!!! Maybe I will be able to go out of the house this summer!

It was HARD. I praise every parent who is still doing the diet...keep it up...it is worth it!

Cole is still taking his med (Keppra 500mg a day)...which we will increase untill we can't go up on it anymore...then probably add another med on top of Keppra and play the medication game.