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!

1.31.2012

COLE'S "FIRST SNOW".

All though Cole has lived in a "snowy place" his whole life, he was never "cognitively" able to experience the snow. We were able to catch his "First Snow" experience on video! This goes to show you, that no matter what a doctor says...never give up!!! Keep fighting for your child and look for the doctor that will listen & help! Thank You Dr. Bingaman for this miracle.


1.29.2012

BECAUSE OF A MULTI-VITAMIN??

Last year, when I was in the search to find help for Cole...I heard a lot about a multivitamin from Kirkman...no, NOT Kirkland (like Costco).  A lot of mom's who have special needs kids use it because it has REALLY great stuff in it like .  A parent said their child had Aspergers and wasn't talking much, after they started the supplement, they noticed that his behavior was significantly better and his words tripled.  I saw a lot more reviews saying that behavior was better and their vocabulary increased (not everyone experienced this obviously) but hey, I'll try anything!  Last month when Cole's behavior was OUT OF CONTROL, I decided to try it...I was skeptical, because I just didn't think I would notice things like that just from a multivitamin.   I called the lady at Kirkman to see which multivitamin I wanted to try him on.  She mentioned that they had a multivitamin with "high doses of B6" & one with "low doses of B6" because some kids can't tolerate the high doses of B6...they get jittery, aggravated etc.  I had her repeat the stuff she just said because we had just raised the levels of B6 by 500% because the dr said it helps with counteracting the "Keppra Rage".  Well, low and behold, Cole was NOT tolerating B6 at all and it was increasing his "Keppra Rage" by 500%!!!   Once she said that, I told her I wanted the one "WITHOUT all of the B6" (called Spectrum Complete).  It's also Hypoallergenic: Free of Casein, gluten, soy, milk, wheat, artificial colorings, artificial flavorings, gelatin, yeast, fish, tree nuts or peanuts.

Anyways, so we tried him on it...and after 3 days I noticed his "Rage" was significantly LOW.  Then, later that weekend he started babbling "mama" again!  I've noticed a lot of improvements with Cole taking this multivitamin...so I am going to keep him on it!

I was SUPER excited because it contains:
-Choline: which is essential in the manufacture of the neurotransmitter acetylcholine
-Inositol: is also necessary for proper nerve, brain, and muscle function.
-Taurine and Glycine: help maintain the neurotransmitters in the brain and produce a calming effect on the body.
-DMAE: which is included to aid in focusing.
-Selenium: which is included for its immune supporting properties
-Molybdenum: which is important in sulfur metabolism and may help support the PST system.

I ordered the one I wanted from here (because I got FREE shipping...Type in "Free" at check out to get free shipping of order's $40 or more)

I ordered this exact one...which is the powder form so I can mix it into his food.  But, it does come in a liquid flavored form, capsules (which can be opened and mixed into food or swallowed) & the powder...which only works if your child can't tell it's mixed in with a slight taste. Cole doesn't seem to mind...but he was already used to a powder vitamin like this. 

If you want to see the other multivitamins from Kirkman go: here
(they have children's chewables, liquid, powder, hypoallergenic, not hypoallergenic...every combination you can think of!!!!)  They Ultra-Test their products too!

1.23.2012

COLE SAYING "MAMA"!

Before Cole seizures started, he was babbling "mama", "dada" & baba". I got a video of him saying "mama" (once), waving (once) & saying "dada" (once)...they were all on my cell phone so they were very blurry and poor quality. I was so sad because I thought I might never hear or see him do/say those things again...and what I had captured was blurry. After Cole's surgery...he said "mama" for the first time 1 month after his surgery...I wasn't fast enough to get it on video & he stopped saying it after a few days. But, he started saying it again this weekend! Here's a clip of him: (turn off the music at the bottom of the blog 1st)

1.21.2012

HEALTHY FOOD IDEAS.

We are trying to stay healthy this winter and decided we need to make a healthier "menu" for Cole. He doesn't like sweets, candy or ice cream...so we are GREAT in that area. But I found that if we didn't have a "menu"...we ended up feeding him what ever was around...it was a lot of frozen chicken nuggets & string cheese. So, this is what I've come up with and he LOVES ALL OF IT! (These recipes can be easily changed to Gluten Free or Dairy Free!)

7am (BREAKFAST):
Oatmeal & Frozen Berries (thawed) from Costco.
10am (SNACK): 
Tangerines & Craisins or Chex.  

12pm (LUNCH): 
Gluten Free Toast, Almond Butter & Banana.
...if you don't do Gluten Free:
Wheat Toast (Costco), Peanut Butter, Banana's & Honey.
4pm (Snack): 
Goat Yogurt, Fresh Strawberry's & Primodophilus (good for the gut!)
...if you are on the go or in a hurry:
Apples (cut up/whole), Avacodo, Fruit Cups in 100% Juice (NOT the ones in HEAVY SYRUP!)
...if you have little ones:
Baby Food Pouches are GREAT to keep in your purse (no spoon need!)
They do have JUST apple sauce pouches...maybe for your older kids on the go?
Do your kids hate fish...but you want them to get Omega-3?
Milled Flax-seed is your answer!  It has 2300mg of Omega-3 in 1 serving...Omega is GREAT for the Brain!  I mix this in Cole's Oatmeal or yogurt.  It's VERY fine and you can't really taste it!  
(...also from Costco!)
Don't forget...a Healthy SMILE!
Tom's of Maine Toothpaste (All Natural)
or 
Colagte Floride-Free Toothpaste
Cole has been eating this "menu" for a few weeks now and he has been VERY healthy.  He did catch a small cold when he went back to school after Christmas Break...but it was EXTREMELY MILD and didn't last long!  Yay!!!

1.10.2012

CHRISTMAS FUN 2011.

Well, I am finally getting around to posting our Christmas day!  My sister-in-law made us this:
...isn't is so cute! I LOVE it. And remember this post where I talked about how much I LOVE this picture.   Well, my sweet husband surprised me with my favorite painting...he had it signed by the artist, Greg Olsen & he wrote me this note on the back of the picture: "Merry Christmas, May the Savior always walk by you and those you love".  
It was the perfect gift for the most AMAZING year that I've ever experienced.  This little boy seems to be the same age as Cole is right now...and even looks like him (except Cole's his hair is darker).   At the end of 2010, I kept feeling like 2011 was going to be a GREAT year.  I kept telling my husband that I felt so good about the coming year....and boy, was I right.  I felt the lowest I've ever felt when his doctors here couldn't and didn't want to help Cole...and I felt like they were trying to take my "HOPE" away from me.  3 days later we were planning our first trip to the Cleveland Clinic.  And by the goodness of others, we were able to take Cole to the most amazing doctors and find out what was wrong with him...not only that...7 months later he was able to have brain surgery and everything went as planned.  I don't know how we got so lucky...I REALLY REALLY don't.  It's weird thinking about the WORST day of our lives (when he started seizing) and skipping forward 2 years later....and looking back at everything we had gone through and how hard we fought for Cole...especially the "actual" fights with drs that thought I was NUTS!  Standing up to the drs (here) was the BEST thing for Cole.  I actually have no regrets of the drs here not wanting or being able to help him...because it was actually a blessing in disguise...it lead us to the Cleveland Clinic!
Now the picture above is my favorite picture EVER.  Cole was quietly sitting on the couch....we looked over and he was staring at the picture of Jesus.  The rest of the day he kept climbing on the couch to stare at it.  If you want to know what a perfect world is to me...this is it!  ...oh, and by the way...did you know Cole couldn't even climb on the couch at the beginning of last year!?!  ...now he jumps, climbs, bites and kicks the couch!
And this beauty in the red wrapping paper is an Antique Window...I kept telling the hubby I wanted one...I love antique stuff, it has a story, it's original and beautiful in it's own way.  However, I am going to paint this one though and hang it up with a wreath hanging over it.
...and last but not least...Santa did visit Cole.  He brought him some snacks that he enjoys!  He gobbled the up.

1.08.2012

GIVEAWAY: EPILEPSY HELMET.

I am so excited...this is my first time hosting a "Giveaway"!!!  This giveaway is  for a Playmaker Epilepsy Helmet from  Kid's Safety Hats (like the Navy Blue helmet that Cole is wearing in the Epilepsy Helmet post below). If you or your child is in need of a helmet because of  special needs or epilepsy etc...please leave a comment with:
-your name & email address or a way to contact you. 
(this will not be published for the public) 

I will  choose a winner at random on January 22.  If you are the winner...I would like to feature the person who "won" the helmet & their story on Cole's blog....and you will get to choose the size of a Playmaker Helmet from  Kid's Safety Hats

1.05.2012

KISSES FOR THE BABY.

Our sweet friends came to visit us while they were in town. They have a cute little girl who kept laughing and smiling at Cole. We were surprised that Cole was very interested in the baby since he typically doesn't pay much attention to other kids in the same room as him. Cole kept trying to grab the baby's head. We were nervous that he was going to grab her and head butt her like he does to us. He kept getting sad when we told him "no". Then all of a sudden he just ran up to her and gave her 5 kisses...I only got 1 (half) kiss on video. He's not around baby's very much...but it's amazing that he was paying attention to her and knew to be "nice" and give her kisses! He even sat next to her, looked to see what she was playing with, then grabbed another toy to play next to her!!! I think because she is "cognitively" his age, he felt comfortable playing and socializing with her...well that, and she also SO adorable! Anyone want to let me borrow their younger baby??  ; )

Here's the video...it's not the best one...because I wasn't fast enough...of course!  The first 5 times he did it, he would grab her head and then kiss the top of her head...in this video, he barely touches her. But it's still cool to see him "interact" with her!
*turn off the music at the bottom of the blog before playing the video*

1.03.2012

RAGE-A-HOLIC.

 It's sad I haven't even had the time or patience to post any of our Christmas pictures.  Instead, I've been dealing with a crazed and psychotic toddler...thanks to his medication.  It's only gotten worse...and he's been spending most of his time in his crib!  I talked to his neurologist and they want to wean him from Keppra (I love how understanding and compassionate they are by the way!  They felt horrible because they know what this drug does to adults & children.  A lot of teens/adults become suicidal on this drug, so I can only imagine how Cole is feeling).  BUT, they want to add another medication (Trileptal/Oxcarbazepine).  I am not a big fan of putting him on another medication...in fear that he might start seizing again.  It TOTALLY freaks me out.  I don't know what I would do if he started seizing again because we put him on another med.  But, I also can't let him feel the way he is on Keppra.  I thought our days of dealing with medications were behind us :(   I HATE THIS!  ...however, today he has been 50% better with his anger...I gave him B6 & vitamin D this morning and I wonder if that what helped.  They say adding B6 with Keppra helps, although it's never proved to work for Cole when we tried it last.  However, I always supplemented him with Vitamin D everyday...until I went back to work & that is about the time that he started becoming angry.  So, I am going to see if Vitamin D does the trick (please pray that it does!!!).   I am also getting his Vitamin levels drawn to see what he is low in. 

OK, now I've got a few questions...
1. have you tried Trileptal with your child: if so, can  you tell me how your experience was?
2. if you have special needs children: what vitamins do you think work the best (I was looking into Kirkman- SuperNuThera, it super expensive...but everything for Cole seems to be & if it works for better behavior and better cognitive results I will use it...but wanted to see if anyone knew anything about it or other vitamins you recommend.
3. I am going to get his blood drawn for: Vitamin levels and allergies lgE & lgG....is there anything else I should check for or advise in this area?

Thanks!