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2.29.2012

6 MONTH POST OP.

 First off, I just have to say that our trip was wonderful thanks to Joe & Emily.  We met them back in June when we went to Cleveland through our Church.  Our church is HUGE...it's world wide, which came in handy for us!  We called the Bishop of the Cleveland ward & they had offered to make us dinner back in June  & September, along with a few other families.  Joe & Emily graciously offered to let us stay with them since there were no rooms open at the Ronald McDonald house...they even made the most delicious meals for us, took us shopping & to & from the airport.  It was GREAT, Thanks guys...We love you!!!  Here is a picture of Cole kissing Ellie (their daughter)...he kissed her over & over & over...it was so cute. 

The plane rides were THANKFUL uneventful this time around...but still VERY exhausting...flying half the day & being in the hospital half the day is a little much!

This is Cole's MRI at his 6 month post op...Left Temporal & Occipital Lobectomy (removal of lobes). This is the first time we saw his MRI after surgery...crazy huh?  The white area is brain fluid now.

Cole had a 1-hour EEG, then we met with Dr. Lachhwai (neurologist) & Dr. Bingaman (surgeon).  Cole's EEG did not show any "S's", however that doesn't mean that he isn't having them, he just didn't have any during that hour...his EEG was abnormal (which was to be expected because of the damage that was done from the seizures.  The RIGHT side showed Large Spikes (meaning that he is prone to having seizures...which was also to be expected).  So, we pretty much have to wait until August for his 1 year post-op so they can compare his EEG from now to then....at the apt we are hoping for his EEG to be completely normal...we already knew going into it that it wasn't likely that his EEG would be normal yet...it takes a long time to heal.  As far as meds go, are switching him from Keppra to Lamictal.  They talked to us about the  dangers of switching him from a medication that could be keeping the seizures at bay...but they also realize that Cole can not stay on the Keppra because of the "rage issue".  So, it will take about 2-3 months to wean the Keppra & get the Lamictal up to a therapeutic dose.  The side effect of kids on Lamictal is an allergic reaction and horrible rash...if that happens, we have to STOP immediately & get medical attention.  We are PRAYING there won't be ANY complications and that it will be an easy transition (haha..."easy" isn't in our vocabulary & doesn't seem to linger in our lives...so we will pray for the best).  I REALLY hope this works because Lamictal is a mood stabilizer...which Cole desperately needs...and so do we!  He has to stay on a medication for 2 years w/being seizure free until we can wean...everything with seizures seems to be PATIENCE...even after the fact of getting them to go away.  I am pretty sure PATIENCE is my life lesson.  Ok Heavenly Father, I think I've sufficiently learned patience...so I won't be need any more adversity ;)  
Dr. Lachhwani is just PLAIN AWESOME!!!  He came to get us from the waiting room, got down to Cole's level, stared at him and said "my goodness, you aren't a little baby anymore!  Look how much you've grown!".  I know I say this all the time...but I seriously LOVE this man.  He is SO genuine.  He loves our family and truly wants to help.  He's the only doctor that has ever hugged us.  I can see it in his eye's how much he loves his patients and wants to help them.   If I was able to clone one person in the world...I think it would have to be him!  

Anyways, on to some good news...I'm not sure if I can talk about it because it's still in the works.  But Cole's neurologist in our home state & Dr. Lachhwani have been talking a lot to each other ever since they started communicating about Cole.  Cole's neuro here has started referring his "complicated" patients to Cleveland Clinic (mainly to Dr. Lachhwani)!  This is EXACTLY what I wanted to happen...after going through the crap that we've gone through...all I wanted was for them to realize that they can't help everyone...so they should refer their patients to Cleveland Clinic or even to other places that can better help them.  Not only that, but Cole's Neurologist here is going to be sending some of the doctors to Cleveland Clinic to be trained!!!  Obviously you CAN'T clone doctors...and the start of this is only a drop in the bucket...but hey, it is PROGRESS!!!  Dr. Lachhwai realizes that other people far away need help and this is his way of helping them.  They are also trying to set it up to work as a "team" so if someone here needs their EEG & MRI looked at...they can send it to Cleveland and tell the drs here what they think and what the best treatment plan would be.  Isn't this amazing news!!!  It's a work in progress and you can't train people to be amazing over night...but it's going to be a great thing! This happened because of 3 little boys....Cole, Bertrand & John.  ...we heard about the Cleveland Clinic from Bertrand's parents & Bertrand's parents heard about it from John's parents.  ...see things happen for a reason...pray for good things to keep coming so more & more kids can get help!

2.23.2012

I'M SO GLAD WHEN DADDY COME HOME!

We leave for Cleveland BRIGHT & EARLY Sunday morning. It's been an emotional month...leading up to this point. I feel like I am more nervous now then I was before his surgery...because THIS IS IT...there aren't exactly any more options as far as treatment goes if he has "S's". So, we are either going to come back a "wreak" or super happy. We have seen a few weird things that Cole has been doing with his lips that could possibly be absent seizures, I hope I am just being paranoid and that he's just playing with his tongue or something.  But, we will see next week.  I haven't been able to "shake" the way I've been feeling for the last month...so I REALLY hope it's good news.  If not, I think it's time to see a psychologist...and no, I am NOT kidding.  I am actually surprised I made it this far with out seeing one.  It might help if the weather wasn't so gloomy & cold.

 Cole hasn't quite mastered the stairs yet, so we keep a baby gate up...but, look who I found sitting at the top of the stairs the other day! This cute little boy was so proud of him self.
A few minutes later...daddy walked in the door. Cole LOVES his daddy & gets SUPER excited when he comes home. He could be screaming, pulling my hair, biting me & head butting me all at the same time...and if daddy walks into the door he gets SO happy...check out the pictures...
See what I mean...now that is what I call HAPPY!!!

2.13.2012

HAPPY VALENTINES DAY!


My darling & talented friend Tiffany made these adorable Valentines for Cole & I L.O.V.E. them!

Cole is doing good and we are VERY anxious to go to Cleveland in 2 weeks. This will be his *first* EEG & checkup since his surgery. We are praying that his EEG will be accurate & DEEPLY praying that his EEG is beginning to normalize & no "S" activity. Can you believe it's almost been 6 months since Cole's surgery. You would think that things would be "easier" since his surgery...but in a way, it hasn't been. My anxiety level has been through the roof, watching and waiting for the "horrible beast" to strike at any moment. We have heard a lot of stories where kids have been seizure free for 5 years & all of a sudden they came back (hence why they don't declare someone seizure free until 6 years of no activity). It makes me SO sick to my stomach. I hate being afraid. I don't want to live in fear, but oh, if you had the experience with a catastrophic childhood epilepsy...you would know how much they destroy the "bright future" of amazing little children. Yes, they still have a bright future a head of them, but it's on a whole new level. A "new level" that I secretly wish I never had to experience. It's been hard having our first child & see his life change over night. I have no idea what I am doing...but just taking it one day at a time, not looking to far a head & just letting the Lord hold my hand every step of the way. But oh how much I love this little boy, no matter what "level" we have to face together. He is so sweet, his innocents and unconditional love is so PURE & GENTLE. Happy Valentines Day!

2.06.2012

VACATION DAY!

Cole has been exceptionally nice today...he didn't cry once & this is the FIRST day EVER in his life not taking a nap (neither one of these things have EVER happened)......it was then that we realized that we FORGOT to give him his meds today!  Thank goodness we didn't see any "S's".  And hopefully this is how he will be when he can finally get off of this horrible medication!!  I was starting to wonder why I didn't feel like I was going to have a panic attack like I do every other day.  We just gave him his meds...our "vacation" will be gone in 3, 2, 1...

2.05.2012

NOW I CAN.

Cole's friend Bertrand went to Intensive Therapy last week (the same one Cole goes to)...and look what they found!  A GIANT picture of Cole going up in the gym.  That is Bertrand's little sis & daddy next to the photo.
I realized that I hadn't even posted him going to Intensive Therapy....so, here are some pictures.  "Now I Can" is an AMAZING Intensive Therapy program....it is very expensive if your insurance doesn't help to pay for it like ours...but it is SO worth it.  Out of ALL the therapy we have done, this has been the most beneficial.  We stopped doing the other therapy at the hospital because our insurance wouldn't pay for that either and it was $2000 for 3 sessions.  So we decided to try the Intensive Therapy that Bertrand's wonderful mom recommended.  I met other mom's who did the Intensive Therapy with their children & saw a lot of improvements in their children in a short time rather then a long time of the other therapy they had tried as well.  It helps if you do the 3 week program, but we didn't have the money to do that long of one...so we did smaller sessions here and there.  After Cole did this therapy, his balance has been AMAZING!!! And he learned how to do stairs the same week of starting therapy.
This is the "monkey cage".
I don't know how to explain how it works...other then it
works their "core balance" but it works wonders!



See the Blue tape on his feet...he also has it on his back and they do it on his hands as well.  It is called Kenisio Taping....which is therapeutic taping....I HIGHLY recommend it!