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4.29.2012

EASTER (late post).

The Easter Bunny brought this cute little boy a Water Center instead of treats. The Easter Bunny must have known that Cole LOVES the Water Center at school. He played in the water for HOURS...it was great, especially since Cole doesn't play with toys. 

Daddy gave Cole a hair cut...he did GREAT! ...and of course rewarded daddy with a KISS!

...oh & the Easter Bunny dropped off cupcakes for us!

4.27.2012

GOOD NEWS & BAD NEWS.

I'm a little behind in posts (like Easter etc) but hey...I've got a good excuse.  Bad News:  Cole is still seizing about 8 times a day. Good News: Cole's Neuro here has been great at communicating with his Cleveland Neuro and getting back to us pretty fast...not AS FAST as Cleveland, but fast for the hospital here.  Cole had a 1-hr EEG last Thursday, he was asleep the whole time...they didn't catch a seizure...but the right side of his brain has High Amplitude Spiking.   So, the game plan is to start weaning his "new med" Lamictal to see if that is the culprit & keep him on the full dose of Keppra...we are praying VERY VERY hard that it is.  We are going to wean this very slowly so we don't aggravate the "Beasts".  We will see what happens and then he will have a 24-48 hr EEG so they can capture a seizure to find out more info of where they are coming from and where they are going.   Sometimes, I just feel like having a HUGE tantrum, stomping my feet & throwing my body on the ground to kick & scream.  Ok, I'm done...now it's back to fight this battle...I've got Cole's whole life to fight this and I won't stopping till I do...LET'S DO THIS!

Look how sweet this little boy is...he gives the
BEST KISSES (which he LOVES to give out)
& has the SWEETEST GIGGLE!
 
His cute summer shoes:
 
& a note from his teachers:

4.16.2012

BLESSINGS.

When Cole started seizing again, it felt like the WOST DAY OF OUR LIFE'S.  A few days later, I literally felt the Love and Mercy of the Saviors arm's around me & my husband.  I felt at peace and felt the prayers of others surrounding our family as the heart break and disrepair was alleviated.   It was an amazing feeling.  I am in a place where I feel grateful for EVERYTHING that the Lord has blessed us with (the good & the "not so good").   I found my self turning to the Lord and thanking him for this trial.  I feel so humbled to have Cole as MY son.  And to have SO many people LOVE him SO MUCH and have a concern for him.  People are amazing, they have taught me what Service, Compassion & Love really is...and I hope I can become more like them- I feel ashamed that I haven't personally thanked all of them...I am sorry if I haven't, but I am really thankful to all of those who are always serving our family & praying for us.

It seems as though, when adversity strikes, the Lord is there to bless us & answer our prayers.  "A" (Cole's Daddy) graduated with his Bachelor's in 2008.  His "plan" was to work for a City as a Building Inspector...however, with the economy taking a plunge, that "plan" didn't work out.  We continued to pray that something would work out so he could take care of our family's needs.  He had quite a few job offers, but kept declining them  because they wouldn't "work" for Cole's needs.  We thought we were crazy for turning good job offers down during a recession...but nothing felt "right".  We kept letting the spirit guide us and low and behold...that job offer came the same time Cole's "S's" came back.  Yep, during the time when we were down, our prayers were answered after 4 years.  We found comfort knowing that Heavenly Father does LIVE & he DOES bless us & IS VERY AWARE of us.  He might not answer them at the time we would like him to, but he WILL.  We thought the City who offered him the job would start him out as an Engineer Tech 1, but they starting him out as the Engineering Tech 2!  I am SO proud of my husband for being so dedicated to his family.  When Cole started seizing he put his career on hold to stay home with Cole, not a lot of dads would do that (and yes, he actually took care of him, he even made the Ketogenic Diet Meals for Cole, which is an absurd amount of time & precision of measuring & making those meals!).  He is a amazing dad to Cole and we love him so much!

UPDATE ON COLE: 
We upped the Keppra to 250mg (AM) & 250mg (PM) 2 days ago.   He is still on Lamictal.  We are hoping this works!  We are still waiting for a *certain* hospital to CALL US BACK so he can get an EEG.  His neuro here & the neuro in Cleveland talked and decided he needed an EEG...well the one here never put an order in and is off this week!  So, I am going to call his neuro in Cleveland to get the ball rolling.  Glad we have a dr who is on top of things.

4.06.2012

UPDATE ON COLE.

So the neurologist wants to keep Cole on Keppra for right now.  On Sunday we will up the Lamictal to the therapeutic dose.  We will wait 1 week...and if we still see "activity" he will need a Video EEG.  Yesterday he had a few small ones & today he had about 4 small ones.  Please keep praying for him.  

Tracking "S's":
April 3: 7 (2pm, right before nap time, was tired)
- upped Keppra to 125mg (am) 250 (pm)
April 4:  4 (7am right after waking), 3 (7:15am)
April 5: 4 (9-12pm at school)
April 6: 7 (2pm right before nap, was tired)

4.05.2012

THANK YOU.

Just wanted to THANK everyone for your love, support & especially your prayers! We have SERIOUSLY felt each and everyone...it is so crazy how the faith & prayers of others can be felt so strong! I did talk to the nurse today & he said they were probably break through seizures...we are waiting to see what they want to do w/his meds. His teacher thought she saw 4 of them...but wasn't sure. Keep the prayers coming!

4.04.2012

IT HAPPENED.


Yes, the one thing I have been so UTTERLY afraid of for the last 7 months.  Cole had 7 small "head drop seizures" yesterday.  I went to pick him up from the wonderful woman who watches Cole...he was sitting in her arms and I saw one out of the corner of my eye, I quickly looked at him and said "WHAT WAS THAT!?!".  Debbie (who watches him) looked at him and that's when he had 6 more...right in a row.  I was in complete shock, all I could do was sit there...I kept saying "maybe he's just tired", "maybe he's just tired".  Debbie assured me that it was a "S".  I didn't want to believe it...she asked me if I was ok and I just sat there staring at him.  She walked me over to the couch, sat both of us down and called her husband & his dad to come over and give Cole a priesthood blessing...I asked if I could have one also.  I was so glad that Debbie was quick to know what I needed and what Cole needed.  This is one of the things that stuck out to me in Cole's blessing:  "You have been blessed by the prayers of faith and you are a very special child of God."    ...I didn't exactly want to tell anyone about him having "S's" in hopes that it didn't really happen...but, Cole had 4 more this morning.  I KNOW how powerful blessings and the prayers of others are...and so, I ask that you pray for him.  We are pretty sure this is happening because of his medication change (either the wean of Keppra or the new medication).  We are waiting on the neurologist to see what his thoughts are. 

If I can ask *one* more thing of you in addition to praying for Cole, will you listen to this talk...if you have a special needs child or know of a special needs child...this is the most AMAZING talk (i cried during the whole thing!)  He talks about his grandson that has special needs.  This talk couldn't have come at a better time for me, then now...2 days before the ciaos hit.  ...and Thank You to the wonderful people who sent me messages saying they were thinking about us during this talk, it meant so much to me.   And Thank You to my co-workers for letting me cry all day long!
You can read or watch that amazing talk here: "Special Lessons", Ronald A. Rasband.
(TURN OFF THE MUSIC AT THE BOTTOM OF BLOG 1ST):