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10.14.2016

ANOTHER CURVE BALL - SCHOOL ISSUES.


This kid has thrown us another curve ball! I wasn't expecting this...since we had his "new school" planned out until he turns 22.  It's 3am and I'm panicking trying to figure out what to do...because that's what I do best.  His teacher said Cole has been doing AMAZING & he doesn't really fit into the "low-functioning" school (which is GREAT NEWS!), however he doesn't fit into the School District classes that he has been in either.  There is a PERFECT Private Autism School that can meet his needs, it's actually a TREATMENT CENTER - year round, so he won't have any "school breaks" except for Christmas.  Cole will run away if he is not in a stroller or shopping cart...if he goes to this school, they will take him to the store EVERY DAY and teach him how to appropriately stay by the cart until he gets it down.  They do REAL LIFE SKILLS that he is in desperate nee of.  However, our health insurance deductible is SO HIGH that we can't afford it.

BUT, I have full confidence that if he NEEDS to be there, it's GOING to work out...(RIGHT AFTER I have this panic attack and melt-down!).  Right before Cole was having Brain Surgery, our Stake President gave Cole a blessing that he would have EVERY THING available to him and ALL of his needs would be met.  Most of Cole's needs are difficult to meet & are typically COSTLY...it sends me into PANIC MODE.  BUT, I've ALWAYS had that "PROMISE" to fall back on & KNOW that things will work out for him.  I don't know how or when but that's the part of TRUSTING + BELIEVING.

This kid has taught me SO MUCH that I can not deny that God exists, everyone has their own trails or moments how they know...and Cole is mine.  He continues to teach me PATIENCE + FAITH + PERSEVERANCE & knowing WHY I exists...those do not come naturally to me & I have to CONSTANTLY learn those things OVER & OVER & OVER, AND I have to learn the hard way, so he sent me Cole.  He knows that I can't and won't give up on that little boy!

Cole has been MATCHING COLORS + LETTERS & gets ALL OF THEM RIGHT!!!! He also says "his" & "bye" at the appropriate time. He is also doing a few other things academically that I thought he would never do. "Go Cole".

[his current obsession: HANGERS...we don't go ANYWHERE with out them; church, family photos, school...you get the idea!!!]

9.01.2016

5 YEAR BRAIN SURGERY ANNIVERSARY.

It's been 5 YEARS since Cole had surgery...can you believe it!?!  I certainly can't.  Some parts of life seem to never pass by fast enough, and once it does, it almost feels like a DREAM.  We are now struggling with different things...like behavior, potty training, sensory issues and an almost 8 year old that is non-verbal and very aggressive.  The older he gets, the harder it is on him and our family.  But I have to say that he is the BEST thing for our family.  Even my 2 year old takes care of him.  She does "hand-over-hand" therapies with him, she is constantly asking if he's ok...or if he's happy or sad,  when we get frustrated with him...she will immediately put us in our place and tell us "mommy, be nice to my brother, I love him" or  if he's attacking us and we get frustrated because he won't stop she will say "be nice to Coe-Coe, that's the how he plays.  She is his PROTECTER and there are things that she would have NEVER LEARNED if it wasn't for her brother.  He has taught her to never give up & boy is she strong willed...I couldn't have dreamed for a better sibling for either of them...it was LITERALLY a match made in HEAVEN


Since it is his 5 year post op...I have to post his video!


and here's a little update on his NEW All-Inclusive School.  First off, I LOVE LOVE LOVE his new school.  It was a little heart-breaking deciding to send him there, even if it is the BEST place for him. Now that I've morned another "Special Needs Stage" and decision, I know that it is the BEST place for him to be.  They are better equipped  to handle his behavior and rage episodes.  The school is almost like a hospital setting, with the actual hospital directly across the street!  There is a FULL-TIME NURSE and PART TIME NURSE at the school at all times which is WONDERFUL!  At his last school he only had a nurse at school on Fridays!  They have a gym with a TON of adaptive equipment like bicycles for them to ride.  The school is on LOCK-DOWN at all times.  There is an AMAZING Sensory Room with a "water-bed" mat, lights, swings and a gigantic Banana Chair that he LOVES.  We NEED one of those rooms...it's actually REALLY cool.  The play-ground is HUGE, CLEAN and also an Adaptive Playground.  It's only been about 1.5 weeks...but so far he seems to be adjusting well.  OH! And they are "TRYING" to POTTY TRAIN HIM.  Which would obviosly be AMAZING!!!  So wish him LUCK on that one! (for his AND our sake!)

5.29.2016

THE PRINCIPLE OF COMPENSATION.


2 weeks after Cole was born, there was a Conference Talk that Joseph B. Wirthlin gave called "Come What May, and Love it".  The first time I heard it (when Cole was 2 weeks old) did not have the same impact on me as it did when he I heard it for the FIRST TIME, AFTER his BRAIN wasn't functioning the way it ONCE did.  

One of the things that has COMFORTED me, was when Elder Wirthlin talked about "The Principle of Compensation.  He said “ 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 & gratitude. STILL...7 years later, that PROMISE gets me through some of the most difficult days.

BACK STORY:
Before we had our daughter, we went BACK & FORTH for MANY YEARS on weather we wanted to have another baby after everything we had gone through with Cole. We (obviously) decided to have another baby.  She is now 2 years old.  She has brought SO MUCH HAPPINESS & LOVE to our family.  She was what we needed to HEAL + MOVE ON.  Everything we didn't get to experience with Cole, we get to experience with her.  She has been a HUGE blessing for Cole as well. She pushes him to LEARN + say WORDS, she MAKES HIM play with her (he doesn't play with kids).  She comforts him when he is sad & even HAND FEEDS him + WASHES his hair + pushes him in his STROLLER. He needed her + She needed him.  

FAST FORWARD TO LAST SUNDAY:
I was working on my Relief Society Lesson for church...my little girl was sitting next to me drawing on a piece of paper.  She looked up at me and said "Mommy, does that make sense?".  I just started LAUGHING & TEARS filled my eyes.  AND THEN IT DAWNED ON ME.  THIS is my COMPENSATION...HER!  I am being "RETURNED A HUNDREDFOLD with tears of Rejoicing & Gratitude"...JUST LIKE Elder Wirthlin said!

If you want to read the Talk that I'm referring to to go HERE

He was an Apostle of our church and passed away shortly AFTER giving this message. Cole has a SPECIAL connection with these Apostles...EVERY 6 months they give talks at General Conference for our church that is broad cast around the WORLD!  Cole does NOT watch TV, most of the time he doesn't even realize it is on.  Ever since he was 2 years old, he will go up to the TV as we are watching Conference & TOUCH the mouths of the Apostle's.  It is one of the MOST AMAZING THINGS IN THE WORLD to watch.  It confirms to me that these men are called by God + that my son KNOWS how SPECIAL they are!

...I submitted this photo to The Friend Magazine  and they published it in this issue HERE

4.24.2016

UPDATE ON COLE.

A lot of you have been asking for an update on Cole's Seizures + Behavior + School for next year.

Medication + Behavior Update. 
We have good news + bad news...as always! I'm SUPERSTITIOUS to say this, but his new medication is improving his seizures.  Of course every time I THINK something is helping he will have a seizure the next day. So, I'll just leave it at...he's had his last seizure on March 9....now we sit AND wait! HOWEVER, now that he is OFF of Keppra...his Mood + Behavior has not improved like we had hoped for.  We ALWAYS thought he was having "Keppra Rage", now that it is out of his system his mood is DIFFERENT. Not better & not worse.  That was disappointing to find out.  But, like everything else...we will move on & continue to fight for Cole.

New School Update.
We, along with his teacher + ALL of his therapist + Principle have decided it would be best to move him to an "All Inclusive School for the Disabled".  I KNEW this was coming for YEARS.  I just didn't know WHEN.  I've been prepping myself emotionally for this.  But no matter how much I "PREP"...the SADNESS + REALITY are still there. I'm happy that he will go to a school that can meet his needs, but sad that THIS IS REALITY.  I still mourn that loss of my "Once happy + healthy 10 month old" to this AWEFUL Rare Condition.   Those same dreams I had for him when he was born are buried deep into my soul...and my dreams for him are much more SIMPLE + SMALL (to most people) but to me, they are BIG DREAMS...like being able to FEED HIS SELF or not wearing DIAPERS anymore.  It's funny how life changes, how your dreams + passion change because of a LIFE EVENT.

I used to think that I was the one who sacrificed my life for Cole so he could come here, experience life & have someone to take care of him. But the more I think about it...he was what I NEEDED. I needed him, so I could be the person I am today.  ...so MAYBE, JUST MAYBE...he said "I will sacrifice a "typical" life  for my mom, so that she can be the person you need her to be."

3.27.2016

ACCESSORY APARTMENT FOR COLE.

  

It's been a while since I've blogged...we have been super busy trying to get Cole's behavior issues under control as well as his NEW seizure type. YES!...ANOTHER NEW SEIZURE TYPE! How is that even possible...he now has had every seizure type known to man. It's been extremely devastating considering everything he has gone through. We have exhausted every medication and treatment. Actually that is not true...there are 3 other options...one being the ACTH steroids which are very costly and the VNS which doesn't really help with the type of seizures he has. Cole was ALMOST 2 years Seizure-Free after his brain surgery. We knew it was a possibly of them coming back during a puberty. But, he's not there yet...so the Neuro thinks it was because of a growth-spurt and now we are desperately trying to stop them again. 

If you are NEW to Cole's Story...here is the run-down:
He was seizure-free for almost 2 years. He started having head-nod seizures and recently (last November) he has started having grand-mal seizures which has been devastating after all that he has been through. Cole continues to be hand-fed & diapered by us, and requires A LOT of care. He is non-verbal but has recently started to copy simple words!!!
There will also be a bathroom with a very large counter/changing table where we can ACTUALLY change his diapers & sanitize it. Currently we have been changing his diapers on the floor of our very small bathroom...he basically ends up laying in the hall & it is SUPER difficult to change him. It will also include a Kitchen/Family Room area & Laundry Closet. 


Cole was born healthy & happy, meeting all of his milestones. At 10 months old he started having 100’s of seizures A DAYHe developed A-tonic drop seizures & Absence Seizures as well as a rare & catastrophic syndrome called Infantile Spasms aka "West Syndrome" & Epileptic Encephalopathy. Cole started regressing developmentally & is non-verbal; he has a lot of mental & behavioral issues. Developmentally he is 10-24 months old. For YEARS his doctors didn’t know what was wrong with him and didn’t know how to treat him or help him. In 2011, we flew across the county to the Cleveland Clinic in Ohio & found a wonderful neurologist who discovered that his left temporal, occipital & partial lobes were malformed aka "Cortical Dysplasia". He had brain surgery to remove those lobes…almost ½ of his brain. 

We have been stewing over how we are going to continue to take care of Cole as he gets older & as we get older. Having Cole go to a "group home" is out of the question...we have talked about this a lot, and we as Cole's parents have decided that the BEST place for him to be, is in our home. We are aware of how hard it will be. But we have come up with a "plan". We are adding a Legal Accessory Apartment above our garage. The city we live in closed the Apartment Applications for a while (meaning you couldn't apply to add a Legal Accessory Apartment). A few years ago, they opened the Apartment Application up again. The apartment will be a 671sf…2 bedrooms (one for Cole when he turns 18 and one for a "respite" worker that will help us care for him while we are gone during the day...that means I could actually work again). 

Until Cole turns 18, we will rent out the apartment & use that rent money to pay for attorney fees (we have to hire his OWN attorney to get "guardianship" BEFORE he turns 18 which will be very expensive as well as a Special Needs Trust AND all of his medical/therapy bills). We are also hoping we will be able to fund a Special Needs Bicycle that we can cart him around in as well as other “adaptive equipment” with the income from the rental as well. Cole has VERY expensive needs and this way we can meet his current needs as well as his "long term" needs of staying in our home. 


I've always been extremely anxious about how we are going to continue to take care of his needs. Ever since we came up with a "plan" I have been much more confidant and less afraid for the future.




2.02.2016

NEW SEIZURE TYPE.

Today Cole had a grand-mal seizure at school...a few months ago he had one for the FIRST TIME. He's had TENS-OF-THOUSANDS of seizures (& every other seizures type) except a Grand-Mal...so why now? I often wonder why this little guy has such a hard life. How frustrating it is for him to not be able to tell me that he doesn't feel good or that he's sad or scared. I often wonder what he's thinking and I dream about the day that he gets to tell me everything his little heart desires. I wonder if he will remember how frustrating this life was for him...or if he will say it was the best experience EVER. it's hard to stay positive when most of the day, I watch him struggle in his body & mind. But, I DO KNOW...that he will be made perfect someday & we will be able to talk to each other...it will be the LONGEST conversation in existence!!!

Jeffery R. Holland says it best:
"I bear witness of that day when loved ones whom we knew to have disabilities in mortality will stand before us glorified and grand, breathtakingly perfect in body & mind. What a thrilling moment that will be! I do not know whether we will be happier for ourselves that we have witnessed such a miracle or happier for them that they are fully perfect and finally "free at last".

9.16.2015

UNCONDITIONAL LOVE.

She loves her brother SO MUCH! She's not even 2 & has taken on the "mommy role" to help take care of Cole. If he comes near something dangerous...she tells him "oh, no no Coe, careful-careful" or if he's crying she says "Coe cry, Coe sad, Coe sad" & rubs his head & kisses him to comfort him. Every night, she helps tuck him into bed, turns his fan on, gives him a kiss & closes the door. Her ability to forgive him over & over no matter how many times he hits or pulls her hair never ceases to amaze me. I'm SO glad this Special little boy has a Special little sister who LOVES him SO MUCH!!! (This is a photo of her pushing him in his stroller).

6.30.2015

LOVING COLE.


I wish strangers knew his story. Maybe they would be more tolerant. Tonight, we went out and Cole was shrieking and an older man turned around and kept looking a us in DISGUST & ANGER, while shaking his head. The last time he turned around, he was about to say something and before he could, I told him, "he has Special Needs, I don't need you shaking your head at me!". I typically try to ignore the dirty looks and comments...but it's been a tough week & I crumbled. At first I was so angry & then I lost it...and cried in front of EVERYONE...it's been a few hours & the tears keep coming. I know he doesn't know Cole or us, but I feel like people treat us like we are "from another planet" and were thrown on the Earth to see if we could survive the constant mocking of Cole's behavior, sounds & movements...and the judgement from others, BECAUSE Cole looks like a typical 6 year old. And then getting the crap beaten out of us emotionally, physically & financially. I feel like a failure everyday, but at the same time, I feel proud of myself for making it through another  day. It's hard not to feel ALONE. That man doesn't know that we are BARELY "hanging on" & tonight, he stomped on my "fingers" while I continue to hand on for dear life. Regardless of what others might think or what I think of my self...I hope Cole knows how much I love him. Because of him, I am a better person. I hope he knows that I am trying my BEST, even though my "best" never feels good enough.

2.01.2015

UP DATE ON COLES "Break through seizures".

We met with the neurologist last week & had a follow up EEG. It was hard to be back at the Children's Hospital. We basically had a year off from the " Epilepsy world" and it was WONDERFUL. No hospital visits, no procedures: EEG's, MEGscans, MRI's, PETscans, blood work etc. It was a much needed break emotionally, physically & financially. ....I forgot how EXPENSIVE everything is! Anyways, his EEG was similar to the last EEG a year ago...however it showed spiking on BOTH the left & right sides...and ended in the frontal lobe...which is consistent to "head nod seizures we have been seeing. So what's next??? Another med. His Neuro wanted to try Depakote. With Cols track record of having "more" seizures or a "new" seizure type from seizure meds...we decided to hold off on Depakote to try a few other things. Another blogger mom recommend we try Frankincense  Oil (I don't have your email to contact you by the way...can you leave it in the comments!) and the Atkins Diet. Remember when Cole was on the Ketogenic Diet when he was 2 & his seizures went from 150+\day to 20/day....I thought since he did so well seizure wise on the diet, maybe the Atkins Diet would help just enough to keep those head nod sz away. So...stay tuned as always! This kiddo always has us on our toes!

12.10.2014

EPILEPSY AWARENESS.


What does Epilepsy mean to you? ...I'll tell you what it means to me....I've {SEEN & DOCUMENTED} Cole having 75,000 seizures & 3 different seizure types in 2.5 years...in those 2.5 years our insurance paid out around $400,000. This December would have marked Cole's "2 yrs of seizure freedom" which is when we could start weening his medication...in hopes that he would have less {RAGE} & help his life be more bearable for him & us. I thought those days were behind us. I'm a bit speechless & have yet to come to terms that 2 months ago...it slowly started creeping back into our lives. I honestly think I'd be a total wreak right now if it wasn't for our new baby girl! As weird as that might seem, that sweet girl has saved me in more ways then I could ever imagine. We are going back to the drawing board...we have basically tried {EVERYTHING} except one medication that will cost $900 {OUT-OF-POCKET} per month...we are waiting to hear back from the Neurologist. It's fitting that November is Epilepsy Awareness Month. 

I'm just going to end this post with a Quote: "I cannot promise an end to your adversity in this life. I cannot assure you that your trials will seem to you to be only for a moment. One of the characteristics of trials in life is that they seem to make clocks slow down and then appear almost to stop.There are reasons for that. Knowing those reasons may not give much comfort, but it can give you a feeling of patience. Those reasons come from this one fact: in Their perfect love for you, Heavenly Father and the Savior want you fitted to be with Them to live in families forever..." -Henry B. Eyring