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12.31.2011

HELMETS FOR EPILEPSY.

All though Cole doesn't have to wear his helmet for Epilepsy anymore (however, we recently started putting it back on him because of his anger issues and head banging)...there are others who are looking for Epilepsy helmets. We've been through 3 helmets already...and they are VERY expensive. Some insurance help pay for them, others don't. So I thought I would share my "secret" of where I got mine since they were SUPER cheap (these same helmets usually run $150-$300 and if your insurance pays for "some" they will cost you about 50% of the cost...I bought all of Cole's for about $50-$60! This is the company I have ordered from & they are great: Kid Safety Hats. These are the ones we've had and they are my favorites, I like them because they have great coverage for the "drops" and are very light weight & can't be pulled off!

Thudguard: $47
(Cole used this one when he started seizing at 10 months & wore it till he was about 20 months.)

Playmaker Headgear: $54
(Cole used the "x-small" from 22months-3years...he can probably use it for another year. We also got the size "small" which is the next size up...we don't need it now...but his school needed one with him so we got another which he uses for his anger issues!
I hope this helps save someone money like it did us! ...better yet, I hope you figure out how to stop the "Beast" so you or your child can be helmet FREE!

12.29.2011

"SELF FEEDING"

Cole has been a bit of a "rage-a-holic"...again! I'm pretty sure it's the Keppra...again! I talked to the his Nurse at the Cleveland Clinic to see if they might change his dosage, but the WON'T make any changes for 1 year because he *IS* doing good. I totally understand, but it's getting frustrating with Cole pounding his head on the Kitchen Tile & head butting our noses/faces, biting the counter top, us and anything else he can get his little teeth on & pounding his fist on his head. He does this all-day-long...and no, this is not just a "tantrum" because of his age etc. It really does have a name, "Keppra Rage"...and it is VERY different then what UN-medicated kids go through. (I know there's a lot of parents who know EXACTLY what I'm talking about with the "Keppra Rage"). It's almost like it makes them psychotic...I'm not even kidding! It's so bad that he has to wear his helmet again, that little head of his cost about $300,000 this year, so we are defiantly protecting it.

But, on a good note, Cole has been doing new things & babbling again since he's been on Christmas break. He stopped babbling when he started school and now that he's home he's doing it again. I think pre-school might be too much for his little brain and so he just shuts down. Right now, we are working "self feeding"...here's a video to show you how much fun it is!!!  ...not really though.
(turn off the music at the bottom of the blog first.)

12.20.2011

BECOME AS A LITTLE CHILD.

(THIS IS A LONG POST, BUT I PROMISE IT'S WORTH READING!)
Back in February when we did our first fundraiser for Cole, there was a 5 year old little girl who had a prosthetic leg (when she was an infant she had a bone disease in her leg, her mom had to decide what to do. She decided that she would have the leg amputated in her daughters best interest. Oh, how I admire her...I know how scary it can be making an important decisions for your beloved child). Anyways, this sweet little girl was at the bake sale. She went home & came back with ALL of the money she had been saving. She went to Cole's donation box, reached up & poured every cent she had into Cole's box. This little girl gave Cole EVERY penny she had.  I think about it often...knowing how much this little girl loved my son to give up every cent she had.  There was another family whose children (whom we didn't know) told their mom that they wanted to have a yard sale to sell their toys so they could raise money for Cole.  And a 3rd story...one of my co-workers 8 year old son sent money to work with her, to give to Cole. And 2 other little kids (whom we don't know) who live in Florida, did a small car wash for Cole. King Benjamin says to "become as a child—submissive, meek, humble, patient, and full of love" (Mosiah 3:19). These children taught me what the really means.

Today, by no coincidence, I heard this talk by Elder Kent F. Richards (who is a surgeon)..."I have noted that children are often more naturally accepting of pain and suffering. They quietly endure with humility and meekness. I have felt a beautiful, sweet spirit surrounding these little ones. Thirteen-year-old Sherrie underwent a 14-hour operation for a tumor on her spinal cord. As she regained consciousness in the intensive care unit, she said: “Daddy, Aunt Cheryl is here, and Grandpa Norman and Grandma Brown are here. And Daddy, who is that standing beside you? He looks like you, only taller. He says he’s your brother, Jimmy. (Her uncle Jimmy had died at age 13 of cystic fibrosis). For nearly an hour, Sherrie described her visitors, all deceased family members. Exhausted, she then fell asleep. Later she told her father, “Daddy, all of the children here in the intensive care unit have angels helping them.” To all of us the Savior said: “Behold, ye are little children and ye cannot bear all things now; ye must grow in grace and in the knowledge of the truth. “Fear not, little children, for you are mine...“Wherefore, I am in your midst, and I am the good shepherd.”

Isn't that SO COOL to hear! I love hearing things like that. It lightens my frustrations, my sadness and heals my broken heart. Elder Orson F. Whitney wrote: “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. It is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire.”

If you know me, you'll know that I am a "planner"...I like to have my ducks in a row and a plan for the future. I want to make sure that Cole's medical needs will always be taken care of...but that is impossible to do...things change, the economy changes, insurance plans change, job's change & when I start thinking of every POSSIBLE scenario I *PANIC*...my heart feels like it's about to pound out of my chest and I feel like I'm about to have a heart attack! But, looking at the big picture reminds me of what's important. If you want to watch or read the rest of Elder Kent F. Richards talk, go HERE.

MERRY CHRISTMAS 2011.

12.17.2011

CHRISTMAS WOES.

It's 2am in the morning and I can't sleep.  My stomach is turning.  I get really bothered around the holidays.  It's a REALLY hard time for me.  For most kids Cole's age, it's full of fun, excitement and Santa.  For Cole, it's just another day of frustration, not being able to talk or communicate, he has no interest in toys (except for a few "infant" toys, but it took a really long time for him to even "like" them), he doesn't get to have a "concept of Santa".  I wish he could be excited Christmas morning and run into the family room to see what Santa brought him.  It might seem superficial.  But it REALLY hurts.   Seriously, it's 2 am in the morning and I am crying about my 3 year old not understanding Christmas...and then I start wondering what's wrong with me. I don't like waking up Christmas morning...who doesn't like waking up Christmas morning?!?  I wish I could go on vacation to a warm, sunny place this time of year so I could just skip it all...however, that isn't an option since I work in retail and it's the busiest time of year.  But, I do have to say how thankful I am, and that I *DID* get the best gift I could POSSIBLY ask for...Cole not seizing.  Many parents are still fighting the "fight" year after year for their child.  I know some parents haven't been as lucky as we have in that area...and I am humbled by that.  Last Christmas that is what I wanted...and yes, I remember that...I distinctly remember last Christmas, saying a prayer...bawling my eyes out, PLEADING with the Lord to let me help Cole and for him to become seizure-free.  It's been an amazing & incredible year.  I feel really selfish for the way I feel about "Christmas", because how many people get to say that they "witnessed a miracle in their own child".   I think it might always hurt every Christmas morning (& the weeks leading up to Christmas) because my mortal mind wants me to "want" Cole to have everything and to succeed in life...and it definitely "puts me in my place".  But, I just have to remember that his "succeeding in life" will be different then his peers...and that's ok.  I think it might be part of the grieving process...some people think once you've gotten through that part, your good to go. But I am ALWAYS going to want the best for Cole and I will ALWAYS want him to overcome the things that are hard for him to do...and so, it's a lifetime of grieving at every stage, and A LOT of rejoicing of what he overcomes.

12.13.2011

12 TEACHERS.

I made little treat bags with Truffles in them for Cole's teachers this holiday.  Want to know how many I made???  12, yes...Cole has 12 "teachers".
2 Preschool Teachers
3 Aids
1 Occupational Therapist
1 Physical Therapist
1 Vision Specialist
1 Speech Therapist
1 Bus Driver
1 Bus Driver Aid
1 Awesome Baby-sitter
These important people make a HUGE difference in his life and we are SO grateful that we live in a place that has services available to special little kids! 

12.08.2011

TIS' THE SEASON FOR COLDS.

Cole never got sick before going to preschool.  He never had the flu, never thrown-up...nothing! (except for a few runny noses and coughs).  Now that he's in preschool, it seems like he's sick all the time!   Before preschool he was NEVER around kids...only a few of his nieces an nephews...but not for a long time.  We had to keep him healthy because he was on the Keto-diet and if he was sick then he'd have more seizures...then came his surgery (dated for June but ended up happening in September) and we made SURE he wouldn't get sick before or after the surgery.  Now that we aren't playing "mystery diagnosis" and trying to figure out how to stop the "S-monster" he's been around lots of kids and in-public.  Since preschool he's had a constant runny nose, a bit of a cough,  throwing up and diarrhea.  I think he's immune system is trying to get used to these yucky germs.  I am pretty clueless when it comes to "normal sicknesses" but, when it comes to Brain Surgery, MRI's, EEG's, Seizures etc I'm a walking text book!

12.06.2011

WE MADE THE LIST.

I am honored to say...Cole's Blog made "The 35 Best Blogs for Epilepsy" list!  Pretty cool huh?  Here's the list if you're in search of some more Epilepsy Blogs.

12.01.2011

COME WHAT MAY, AND LOVE IT.

Today is Cole's 3 month anniversary of his surgery!  To celebrate...daddy & I are going on our 1st "movie date" with out Cole, since December 2009 (we brought him with us to that one).  Yes, it has been that long since we've been in a movie theater.  ...it's hard being a parent of a child with seizures...I hope to never have to deal with them again, though,  I can sympathize with the parents that are currently dealing with it.  It's defiantly one of the harder things in life to deal with...though, you still have to "try" to live life and make the most of it.  I TRULY commend the parents whose children's life have been handicapped by those PESKY-HORRIBLE seizures...and those that have special needs children.  Being a parent to these children are not usually coveted & it takes MUCH time, money, resources, energy & everything you live for, to raise these special souls.  I know we will be compensated by our maker for what we've "lost", the things our children were never able to experience or the things we never got to see them do.  I've had some hard times accepting what is to be (especially before finding the Cleveland Clinic & not knowing what was wrong with Cole).  Do you want to know what helped me?
 This:  
"The Lord compensates the faithful for every loss. That which is taken away from those who love the Lord will be added unto them in His own way. While it may not come at the time we desire, the faithful will know that every tear today will eventually be returned a hundredfold with tears of rejoicing and gratitude."
This is an AMAZING talk by Elder Joseph B. Wirthlin, called "Come What May, and Love It".  This talk ironically came out a week after Cole was born...before we knew anything that was to come...it didn't mean as much to me as it did after Cole's life changed.  When I need perspective or a little comfort...I read or listen to this, it's gotten me through some though times.  He talks about a grandchild he has that is autistic.  If you need comfort you can Read Here...Watch SHORT version here...or watch the FULL version: (turn the music off at the bottom of the blog 1st.)